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Life Redefined: In Sickness and in…Sickness, I’m Stuck With You Forever
I remember the day my doctor told me the lump in my neck was thyroid cancer. I remember that the very first thing I felt after hearing him say “cancer” was relief. I know that sounds completely ridiculous. How could I possibly be relieved to hear the doctor tell me I have cancer?! I wasn’t relieved that the lump was cancer. I was relieved to have a game plan. I remember the weeks leading up to my cancer diagnosis, and during those weeks I was being consumed by anxiety. You see, I had a gut feeling the very instant I found the nodule on my thyroid that it was cancer, so to actually have those instincts confirmed was relieving. Once I felt that relief, I was naively under the impression that I could handle everything that was coming with no problem. Yes, I knew that I was facing surgery and RAI, but I thought I had already overcome so much anxiety that I could endure everything else.
I’ve since come to learn that life after diagnosis and treatment is so much harder than anything else I’ve endured to date. It’s harder than the biopsies, the doctors’ appointments, the surgeries, and the radiation. After the surgery and the RAI were over, I had to suddenly figure out how to get back to living.
I remember the very first meeting I had after being away from school and work for a couple of months. I was sitting in a conference room with about eight other people. Colleagues. Friends. And when I was sitting there, in that moment, I realized that the only thing that had changed was me. Everything else was carrying on as it had before, and I could not grasp that. It seemed as though life was going on all around me but not inside of me. I could not understand how these people could be talking about various projects when I was dealing with CANCER. While everybody and everything around me seemed to be the same, I was so drastically different and I could not figure out where I fit in.
That’s what cancer will do to you—it will stop your world from spinning while everyone else’s stays in motion. But the thing is, you can’t just stay in your own world. To really live, you have to figure out how to be a part of everyone else’s world, too. That’s been a hard thing for me to figure out how to do. I can’t just forget about cancer because it’s always there. Every ache, pain, bruise, cough, headache, and lump triggers a train of thought that leaves me with the conclusion that my cancer has metastasized. Every time I look in the mirror and see the scars on my neck I am reminded I have cancer. Every time I take a pill I am reminded I have cancer. Cancer is always there.
The presence of cancer in my life does not change the fact that I have to figure out how to keep on living. I HAVE to live or I’m letting cancer win. I haven’t completely figured out how to accomplish that, but I take it day by day. I’ve learned that I need to talk to people whose world has been stopped by cancer. I need to talk to people who have already been in my shoes and already know how to live side by side with cancer. I have a buddy who has lived with cancer for many years. When I am with him, I listen and soak up as much wisdom as I can. This is new territory for me, but it’s not new territory for my buddy, so I learn as much from him as I can. And what I’ve learned is, it’s normal to feel anxious with every ache and pain. It’s normal to feel as though you have changed but nobody else has. I’ve also learned that it’s okay to feel these things. It’s okay to let these feelings become part of who you are. Rather than fight it, I’ve learned to embrace it. I don’t embrace cancer in an “I’m so glad you’re with me for as long as I live” kind of way. I just accept that love it or hate it, it’s a part of my life now. With my friend’s nuggets of wisdom combined with advice from others who have walked this road, I’m learning how to get back to living, and even though I can only live small chunks of life at a time, I’m living.
I don’t claim to be an expert. I’m not. I don’t claim to have all the answers. I don’t. But I do know that life is worth fighting for. When I give up on life, cancer wins and I refuse to let that happen.
How do you get back to life after diagnosis and treatment? How do you live alongside your disease? I want to learn from you, so spill!
xoxo,
Joanna
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September is Thyroid Cancer Awareness Month and Dear Thyroid is launching two campaigns to raise awareness for thyroid cancer and to recognize thyroid cancer survivors. We want you to participate as we stand together to give a voice to thyroid cancer patients around the world.
We are compiling a list of thyroid cancer survivors. We want to recognize you. We want to celebrate you. If you want to be on that list, read this post and email me your info!
We’re also going on a blog tour and want to make a stop at your blog. If you’re a thyroid cancer survivor and a blogger, check out this post and let me know if you want to participate. We hope you will!
Tags: (RAI) radioactive iodine treatment, despite cancer living a life, first time hearing you have cancer, hearing your name in association with cancer, how a cancer diagnosis changes you, I’m Stuck With You Forever Written by Joanna Isbill, life after thyroid cancer, Life Redefined: In Sickness and in…Sickness, life with thyroid cancer, living with cancer, Thyroid Cancer in Young Adults Column
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37 Responses to “Life Redefined: In Sickness and in…Sickness, I’m Stuck With You Forever”
Leave a Reply to HDinOregon
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My Goiter was non cancer so I am in awe of your courage. Your story is heartfelt and I would give you a hug now so consider yourself hugged.
3 hugs a day, keeping in touch with those around you. Draw from their strength and take it in.
I am trying to overcome the issues of Graves. I hope it continues to be better, today I am having a setback. But I will be better soon. I am going to be on top of this. I will allow myself to be sad once in awhile but not enough to stop me from getting better.
It is sad how bad things happen to nice people, I can tell you are too.
Be well and win. Love, Linny
Thank you for the hug, Linny. Hugs back to you! Please do no think that just because your goiter was found to be benign, you are not as courageous. Each person deals with thyroid disease individually. My disease is not more important than yours and vice versa. You are a fighter. You are also human–it is NORMAL to have setbacks. You just keep fighting forward and keep seeking wellness!!
xoxo,
Joanna
Thanks for sharing your thoughts and feelings. My nodule was not cancerous, thankfully, but I was diagnosed shortly after with both Graves and Hashimotos. I didn’t know what either of them were and could not even comprehend how I could have them both. I have experienced the same feelings as you and although I do not personally have a friend with similar experiences I have surrounded myself by people who care enough to educate themselves on what I am going through. That has helped me tremendously. I can’t imagine going through this alone. I have just started medication and have already had a few set backs but I am starting to learn to live one day at a time. I have to get over myself and ask for help when I need it and accept the fact that I am sick.
For every bad day, there will be a good one.
Jill
Hi Jill, thanks for commenting! I am SO glad to hear you’re surrounding yourself with people who are willing to learn what you’re dealing with. That is so fabulous and refreshing to hear. You should not have to go through this alone, so any time you feel that way, come here. Dear Thyroid is here for that very reason–we NEVER want anyone dealing with any kind of thyroid disease/cancer to feel alone.
I think setbacks are to be expected and are a normal part of dealing with any disease. You seem to be on the right path, though–taking life one day at a time is all we can do. Our health is too important to live any differently.
xoxo,
Joanna
I have had my husband thru this whole ordeal. But that has been all. I have found this source and one other where I met a sweet lady I call Bara. She became a great comfort on line for me and this relationship started a couple of years ago on line.
I have never met her in person. Yet she gave me endless hours of encouragement along the way. She answered me ever time. I have been so lucky. She has taken me under her wing and listened and guided me thru the worst of this illness. My husband although supportive was overwhelmed by the enormous needs I have had.
Thank you Bara….you are out there and reading this come forward if you want~ love you, Linny
Linny, I’m SO thankful you have Bara and your husband as sources of support.
Hi Joanna,
You have so eloquently put into words exactly what I have been feeling and experiencing. Isn’t it weird when looking back that it’s like an out of body sensation: physically you are present but it feels as if you’re a spectator looking at everyone around you and wondering what the hell is going on. Don’t you just want to shout, “Here I am, here I am, this is me, can you hear me???”
Cancer can suck the life out of us, and sometimes it’s such a heavy burden to carry. I am at a questioning phase of my life right now post-cancer and wonder how many more phases I will be going through.
Today my drug of choice is yoga. Yoga is the only thing that completely changes how I feel after I walk out of the studio when I’m having a crappy day. It centers and grounds me so that nothing, not even cancer, gets in the way of living.
And when I visit DT I always find solace here, too. Thanks for sharing and writing.
☮ ♥
Monica,
I am blown away. I have told doctors that I feel like I am not an active participant in my own life, that I feel like I am watching a movie or something. Wow! I thought it was just me.
Donna,
Nice to meet you. Hmm, are you my twin? Because you sound just like me.
🙂
☮ ♥
The hair on my arms is standing up. Yikes. Nice to meet you too! Look forward to sharing more experiences. Thank you!
Monica, it IS like an out-of-body experience!!
Cancer can be SO very life-sucking. It can be extremely heavy to carry. Learning how to live alongside is truly an on-going process for me. I don’t have the answers. And what works for me today might not work for me tomorrow.
I love that you have an outlet. If yoga is what works for you, then you should do yoga! I just started reading about about how to live with cancer after treatment. The author, a cancer survivor herself, says that, “Life is always terminal; cancer may or may not be.” I love that so much, because what she’s saying is, we have to focus on LIFE. We are all going to die one way or another, so we have to figure out how to focus on LIVING.
Thank you for sharing–I value your input so very much!
xoxo,
Joanna
Joanna,
No matter how you slice it or dice it… Cancer sucks!
{{{Hugs}}}
HD in Oregon
HD, there really is no other way to put it–cancer sucks!
xoxo,
Joanna
Joanna,
Well said. I can’t say I’m pleased that I had to endure this ordeal but I accept it because I have no choice in that. But I do have a choice about how to manage my life and my health. I am living in the moment, for me and those I love and cherish. I don’t expect people to get it that have not lived it because most of them don’t. I’m not wasting my precious time justifying my disease to any one that does not care to get it. I’m grateful for those that do.
Donna, your perspective is great. We absolutely cannot change the fact that we’ve been diagnosed with thyroid cancer. We cannot control that. BUT, we can control what we do with our lives after diagnosis, after surgery, after treatment. Choosing to live rather than be buried under the burden of cancer is not always an easy choice to make, but the choice is there for us to make.
I appreciate what you say about not expecting people to “get it.” That gives me so much to think about, because I think I do expect people to get it. Actually, I expect people to make the effort to understand what I’m going through. Many people don’t make that effort, and I am still figuring out how to deal with that. I appreciate your point of view so very much. Thank you!
xoxo,
Joanna
Honey, I live by the saying that if I expect nothing I will never be disappointed but sometimes I will be pleasantly suprised. I was this way before cancer and it has paid off in dividends. Have a great day 🙂
Joanna,
Such great writing. Thank you,
Amanda
Amanda, THANK YOU for your unwavering support, for me and for Dear Thyroid!
xoxo,
Joanna
Dear Linny,
Thank you dear for your strength and love because you have helped me as much as I have helped you. All your beginning emails were so painful from lack of your mother’s love and family support in general. I am sure many of us who have graves or Thyroid Cancer also have expierenced the same loss of acknowledgment. I love writing to you, wish I had more time and less work but one day when I retire your emails will be filled daily, weekly, cause I love you and you are one of the very few good things that’s happened to me getting this horrid and dwarf disease. You really are doing so much better then when we first met and Dale has been your rock, all of us should have a Dale in our lives. So sweetheart, keep growing and loving life and all that is around as you do, and we will walk this road together you and me… Wishing you the best.
Love,
Bara
Thank you dear Bara, you mean so much more to me then I can say. I want everyone to know how special you are and what a huge amount of love you have to share. You have had a rough road yourself and if I gave you any comfort I am so glad that I could give back. Bless you too, Linny
Linny dear, YES, YES, YES you have given me a lot of comfort..just knowing that you exist is a comfort because your life force is beautiful, engulfed in love and light, and the world needs more Linny’s like you. And, to be friends, well, what else can I say but I love you and graves did me right by allowing you to read my story and find me…now I have found you, and I’ll never let you go….a deal? Keep smiling even when you feel like crying, there is always a rainbow whether in the sky or in your heart, I know I’ve seen thousands.
Bara xxoo..
You know Bara it’s taken so much for me to share this all out in the open. I still do not have a Facebook, I cannot twitter I am taking a leap of faith and hoping that in helping myself I am helping someone else .like me. I am still afraid but I am getting braver, you have so much to give and tell. Your book is so much more than you realize. Not the famous stuff, the things that you yourself have endured. Your childhood and your losses. I admire you for sharing it all out there for the world to read and know.
I am proud to know you Bara, the very strong brave woman that you are. I look forward to that time we plan to get together in person. But I already know how very linked and close we are. Thank you , Love you too, Linny
I know exactly what you mean! Everyone tries to be understanding by not talking about IT. The silence is meant to be a sort of mark of respect, but for me it just makes me feel terribly alone. It feels like I am afloat on a piece of driftwood amidst a moving sea of people but I can’t be saved and nobody cares. A silly analogy when I have a wonderful husband, etc. But the feeling remains. . . Thank you for putting into words what I am still having a hard time with (Hashimoto’s with Thyroid cancer and TT iin Feb. 2010.)
Jenny
I agree, Jenny–the silence is horrible. I HATE the silence. It singles me out, and not in a good way.
I’m glad you’re part of our community, because we do not believe in silence. When it comes to thyroid diseases and cancers, we have a big voice! We’re here for you every step of the way!
xoxo,
Joanna
I love everything you said here.
I often feel that my world is entirely different now. Its strange, to me, how I can be in a room full of people that have no idea I have cancer. Its like I want them to know. I don’t want them to pity me, but I want them to know. Unfortunately cancer is my life, so if we are going to get along, you need to know that upfront!
I agree–I want people to know. Like you, I don’t want to be pitied, but I want people to know what cancer can do to a person, to a family. I want people to know so they will do their part to raise awareness. I want people to know I have cancer. If I am going to live with it, I can’t hide it.
xoxo,
Joanna
As an almost 11 yr young survivor of metastatic thyca, I promise you there will come a time when you don’t think if thyca every day. Someone told me that way back when and I laughed. A decade later I see it’s true. Be well!
Jpo, it is SO hard for me to imagine going through an entire day without thinking about cancer. THANK YOU so much for the encouragement, for giving me something to work toward! I appreciate it more than you know.
xoxo,
Joanna
I can compare what your saying to this:
I was a widow. But I’ve been remarried a long time. I don’t feel like a widow anymore. I still have the scars and stuff but I don’t suffer Like I used to. It’s just all part of who I am. But it doesn’t define who I am anymore. Is this right? Is this what you mean? JPO?
Dear Joanna,
You’re such a strong badass gal! I hope that you also are reminded how amazing you are every time you look in the mirror – maybe after some time passes, the word “cancer” will be at the bottom of the list. I’m waiting for “Graves Disease” to stop being one of the first things in my head when I look at my eyes in the mirror, or at my goiter. One day it’ll happen!
xoxoxo,
Nicole
One day, Nicole, we’ll both be able to put our thyroid issues at the bottom of the list. Until then, it’s all about being able to look in the mirror and know how to love and live with the person staring back at you. I know that’s no easy task, but it’s something I know I have to deal with because right now, if I can’t live with cancer, I can’t live. You know what I’m saying?
xoxo,
Joanna
Ladies, guess the bottom line here is with all types of illnesses one has to embrace it and accept it with love, then our bodies will start healing faster. Or at least this is how I see my illness and other illnesses I have watched my friends go through. I have been able to process my graves and thyroid eye disease so much better… It’s like I don’t complain of my bad eye hurting as it does any longer, some people do not have an eye or both. I keep all my phantom pains to myself now, once I realized how my pain made others uncomfortable and they couldn’t help anyways. When I stop to think about my graves and what it has done to me and my body I could go into self pity for sure then I think of all those who have worse diseaes and can’t do any of the things our illness allows us to do. Meaning, our illness limit us to a degree but nothing compared to other illnesses. I forget I have thyroid eye disease until my eye hurts or I can’t see so well, even with glasses on, then it is a quick reminder to be gentle on myself and move on. The good thing about our illness is that we have the time to eat better, live better, love better and our bodies will respond to us faster and hopefully heal faster. Some illnesses never give you this freedom. So after 14 years of having graves and 4 years of having thryoid eye disease have finally been able to see the light at the end of a long tunnell and I’m good. We all need to stick together and support new friends coming down with thyroid illnesses of all kinds… Just my thoughts for the day on my graves…(smile). Hope everyone has a great weekend!
Bara xxoo..
PS: Linny am proud to call you friend dear, cause I love and admire you…now enjoy your twins this weekend and your doggies too!
Bara,
Thank you for sharing your experience with your disease and thank you for sharing your opinions. We welcome and appreciate everyone’s opinion, even when they differ from our own. We’re not always going to agree, but DearThyroid.org celebrates Freedom of Speech (save religion and politics).
Speaking for myself, while I don’t think that embracing and accepting my disease will heal me of my disease, I do believe that embracing and accepting my disease will allow me to live alongside of it. For me, there is an important distinction.
Dear Thyroid also takes the stance that we do not compare diseases. Many people sadly die from thyroid diseases and cancers. Many people almost die from thyroid diseases and cancers, and so so so many people’s lives are turned upside down by thyroid diseases and cancers. To compare what we go through with another disease marginalizes our experience. We never want anyone to feel marginalized. Thank you in advance for NOT comparing or promoting the comparison of diseases on DearThyroid.org.
Again, thank you for sharing your experience! We want to know about your experience with your disease and how your disease has changed your life.
Joanna
Dear Bara, I would certainly consider you to have been MY MENTOR ALL THESE YEARS>>>>>YES IT WAS AND IS A GOOD IDEA!@~ Happy to provide the example 🙂
Dear Joanna,
May I suggest you read the book by Marianne Williamson “A Return to LOVE” a course in Miracles.
It is so meaningful and comforting……I think you will love it…..Fondly Linny
Page 208:
Love changes the way we feel about our disease. Illness comes from separation, says A Course in Miracles, and healing comes from joining. Of course people hate their cancer, or hate their AIDS, but the last thing a sick person needs is something else to hate about themselves. Healing results from a transformed perception of our relationship to illness, one in which we respond to the problem with love instead of fear.
When a child presents a cut finger to his or her mother, the woman doesn’t say, “BAD CUT” . Rather, she kisses the finger, showers it with love in an unconscious, instinctive activation of the healing process.
Why should we think differently about critical illnesses? Cancer and AIDS and other serious illnesses are physcial manifestations of a psychic scream, and their message is not “Hate me”, but “Love me.”
Thanks for the book recommendation, Linny. I’ll check it out!
I’ve never been one to seek physical healing by loving my disease. Personally speaking, it doesn’t work for me; even when I was little, I remember hurting my hand, my mom kissing it, and me telling her it didn’t work. What does work for me is learning to live WITH my disease. By learning to live alongside my disease, I’ve been able to see the good things that have come into my life as a result of my disease.
Thank you for sharing more about what works for you!
Joanna