I am so sorry.
You didn’t ask for this, and you probably didn’t see this coming.
Scared. Upset. Alone. None of us feel ready to face this type of news. And all of us are confused by this thing they call The Good Cancer. Because it sure doesn’t feel good.
These are the thoughts that keep you up at night.
I’m writing to you as a woman who has been where you are, unexpectedly diagnosed with thyroid cancer, and now, who has seen her way through to the other side. Not to the “you’re 100% cancer free!” side, but far enough along to see that the hard stuff was worth it. My treatment worked. I’m not writing as a doctor or to give any medical advice. I’m writing because I wish someone had written to me at a time when I could have used some gentle words to guide me.
One year ago I was diagnosed with a type of cancer called Papillary Thyroid Cancer. It had spread all over my neck and lymph nodes in my upper chest. Before I could even get the words out of my own mouth I was quickly searching the internet for any information on people’s experiences, any story I could find, something that would give me a hint of what I was about to go through. I came up with nothing more than a pile of anxiety-inducing forums that sent me on a downward spiral. It was intense and it was dark. All the while everyone was telling me this was The Good Cancer. It felt wrong to struggle, but I did. I felt embarrassed to admit what I was going through was hard on me.
That is why I’ve written you this list. So you can walk forward with a bit of insight that won’t make you feel anymore terrible than you already do. Perhaps a little uplifted and hopeful instead. An alternative to that downward spiral. A real, raw, personal experience with this sometimes yucky, yet truly manageable illness.
While I know I can’t take the fear or sadness away, I can say that you do have reason to take heart. You have reason to be brave. You may find yourself contemplating the downward spiral of internet forums and scary stories that we’ve both heard, but try not to slide too far down that spiral until you consider a slightly more positive alternative.
You’ll learn many of these things in your own way, in your own time, but why not get a little head start and prepare yourself for the journey? Here’s a little of what I wish I had known and a little of what I know now. You’ll know so much more than this in the end. Your wisdom will be a token of accomplishment that you’ll gently carry with you each day forward and one day you’ll share these things with someone else.
Be mindful of the internet.
The majority of the voices on the internet are of those who are having a bad experience with thyroid cancer. The rest of us, those who are having a positive experience, aren’t going to the internet to address our issues. We are out here living our lives, most likely to the fullest. Want to know someone’s experience with thyroid cancer? Aside from medical journals and websites, step away from those internet forums and find a thyroid cancer survivor who is out there living their life. It is in them you will find an equal dose of hope and reality, and on the internet- you’ll most likely encounter something a bit more troubling (unless, of course you’re reading this!).
There’s no need to call it “The “Good Cancer.”
I had to turn those words off in my head because they only confused me. I understand why they call this the good cancer. It’s because I have a very good prognosis and I most likely would never need treatments such as chemotherapy. But that didn’t mean this would be easy. Words such as “The Good Cancer” seemed to dismiss the struggle, and the struggle is real. You have cancer and you need treatment. You won’t like it much, it isn’t fun, it will disrupt your life and it will be hard at times. Try not to compare what you go through with another type of cancer- be grateful for the positive outcome you will have, but don’t ever feel you need to call it good until you feel ready to call it that.
Accepting help will change your heart’s trajectory during this time.
This isn’t easy. For most of us, we’d rather think we can take care of ourselves, however this is not a time to allow our pride to get in the way. Let your family, friends and even strangers help you. I had dear ones give me meals, come take care of me, pick up slack at work, watch my son and even help me with my bills. Instead of just feeling bad during this time, their love and kindness swept me up into a whirlwind of beautiful encouragement and peace. So let your fridge fill up with other people’s tupperware and love and allow you and your family to be blessed. In accepting help now, one day you will be able to do the same for someone else in need.
Your children may struggle, but not forever.
My son was three and a half when I was diagnosed. He was old enough to understand that I was sick, but he wasn’t able to prepare himself for my hospital stays and surgery. His behavior changed and he struggled when he was separated from me. I quickly learned that while I wanted to see him more than anything, sometimes hospital visits and seeing me unwell were too stressful for his sensitive self. His behavior changed a bit too and he acted out. Just know that your child’s behavior is an expression of the hardships he or she is feeling, and just like you will get better, so will their behavior. Support from family and friends, as well as lots of cuddles and down time at home, helped us overcome all this. There is no doubt that we are closer now than before.
Your endocrinologist will become your friend.
This has been my key to getting through this. I found a doctor I love and she is receptive to me and my concerns. In fact, she is the person I go to rather than searching the internet. She is the person who knows all the little details about what I’m struggling with and she’s there to celebrate with me when we get good news, because she, of all people, knows it wasn’t easy to get there. I know how to contact her and trust she will get right back to me. While the search can be overwhelming at first, seek out recommendations from others and know that the right doctor for you is out there. And if you don’t feel your needs are being met, you may want to look elsewhere because your endocrinologist will play a vital role in your well being from now on.
Worried about weight gain? Try focusing on positive lifestyle changes instead.
I know, the fear is real. Remember that internet warning? I think I searched “thyroid cancer and weight gain” more than anything. Can you guess what came up in the results? Nothing good, that’s for sure! I remember a coworker who told me about someone he knew who had thyroid cancer. Expecting him to have kind words to share, he instead puffed out his cheeks and put his hands out at his sides to motion the friend gained weight. I was devastated. I had to put an end to my negative thinking and focus on all those around me who had been through thyroid cancer. And you know what? They all look great!
The key for me has been to find an endocrinologist that I trust, the right medication dose as well as adopting new eating and exercise habits. I still worry at times, but it’s a lifestyle change that I am still undergoing and it’s been nothing but good for me and my family. I’m actually pretty excited about it!
Keeping a cancer binder is a must have.
This is for all the boring, logistical stuff. Keep bills and letters from your doctor in there. For me, of course I had to find one that was prettier than what I was going through, so I spent a little extra money to make sure it was something I didn’t mind lugging around. This is a boring, yet useful detail that will save you the trouble of losing all those papers and notes, while also not losing your mind! Make sure you keep a pen and highlighter in there too and bring it with to all your doctors appointments. Sometimes it may be helpful for a friend or family member to come and take notes for you.
Biopsies, scans and surgery are scary, but you can do it.
These aren’t fun, there’s no denying it, but there are ways to help you through these procedures. Don’t be afraid to talk to your doctor about your fears. In my case, I tend to take an anti-anxiety pill prescribed by my doctor before certain procedures that I know I don’t like. I don’t like biopsy needles and the scans make me feel claustrophobic. And if you’re afraid of surgery- don’t worry, they give you a very helpful shot of drugs in your I.V. to help you feel very, very good before going in. Let them know when you are afraid or nervous and they will take extra special care of you.
As far as non-prescribed help? Whenever I’m scared, I try to remind myself of how wonderful it is to live in a time and place where I have access to these life saving procedures. While not always easy, it tends to add a dose of appreciation to any lingering fear.
Find someone who has been through this.
This is still extremely important to me. The conversations I have with those who have been through this before have been my greatest hope during this time. Looking at them now, happy with their families, some pregnant and beautiful and living life to its fullest- this was important to keep my spirits high. It didn’t change all the fear and concern I faced, trust me, I was wrapped up in the reality of how hard things were and I was not happy for a while- but it did give me something to strive for. It simply helped to know I’m not alone in this. You may also want to consider talking to a counselor or other professional during this time.
One day you will have reason to celebrate.
It had been quite a while since I had any positive news from doctors. I certainly wasn’t used to celebratory test results. Then a couple weeks ago I went in for a post treatment biopsy, and after an ultrasound of my neck, the doctor returned to tell me she wasn’t able to find the suspicious lymph nodes that everyone was suspecting. My endocrinologist was baffled, I was shocked. Then it hit me- all the fear and tears, the surgery, the special diets, the radioactive iodine treatment, the isolation and hospital stays and the time away from friends and family and my sweet little boy and the time off of work and each and every thing I did to try to be brave and keep going forward- it all worked.
In the end I realized that everything I feared along the way was all just a part of the process of getting better. Even if my thyroid cancer comes back one day, I know that I’ll never face the fear of going through this for the first time again. And I’ll know that it’s worth it, even if I don’t feel that way right away.
You, too, can do this. All those details you are worried about will fall into place and you will see how loved you are and how strong and brave you are. And soon you’ll find yourself breathing in deep breaths of appreciation in all the small things you get to do each day, because my goodness- look what you’ve made it through! Take heart, my friend!
Are you or someone you know facing thyroid cancer right now? Please feel free to reach out to me if you need any support and pass this on to those who may need a little dose of optimism in their journey!