Receiving a thyroid cancer diagnosis can be a life-changing moment and it will take some adjusting to. In addition to navigating all the new information and potential life changes, there may be a range of emotions. I cannot emphasize enough how important my caregivers and support network were to me. It was challenging to stay on top of my emotions and sometimes I did lash out at those closest to me. I’m not proud of it and I did strive to genuinely apologize and work on being better. I also needed to be gentle with myself as I really am my own work critic.
If you’re someone living with thyroid cancer, perhaps this resonates with you. However, if you love someone with thyroid cancer, here are 20 things to remember.
1. A cancer diagnosis was not a part of their plan
A diagnosis can uproot your plans – for that vacation, to start a family, to get that puppy, to move, to hang out. Remember that they didn’t plan for this either and this life change was not something they wanted or asked for.
2. Telling them that their cancer is the “good kind” is not helpful
Thyroid cancer has a generally good prognosis, especially if caught early. That is a bright side, but it is still cancer. Thyroid cancer is not easy and it doesn’t help to treat it like a wart that can be zapped off and forgotten about. Doing this may make the person you love feel like they’re overreacting when they need to just be with whatever they are feeling. It’s also unfortunate that because it has this reputation of barely even being cancer, many people with thyroid cancer don’t get the best care or follow-up support and struggle with their quality of life for many years after the diagnosis.
3. They may have lots of emotions – fear, hope, anger, sadness, confusion
I went through all the above and it felt like an awful roller coaster. Know that all these feelings are valid and a part of the process.
4. They may have mood swings
As I mentioned before, it was challenging to stay on top of my emotions. Sometimes I felt so low, I curled up in bed and didn’t move all day. Other times, I was also on medication for depression. I often didn’t want to face the more negative emotions and I would pretend to be okay until I wasn’t. I found that starting a meditation practice helped tremendously with listening to my body and emotions. I personally invested in the Muse headband which was recommended by the therapist I was seeing throughout my treatment. I absolutely love it and still use it.
5. They may feel uncertain about their scar from surgery
Sometimes, I thought my scar was pretty badass. Other times, I just wanted strangers to stop staring at my neck.
6. Their body will experience changes
In addition to the physical scar after surgery, the body will also need to adjust to not having a thyroid. The thyroid controls the body’s metabolism and so this affects weight, temperature control, energy levels and more.
7. They will likely have to make some difficult decisions
Total thyroidectomy or partial thyroidectomy? Radioactive iodine treatment? Do I stay at work or do I need to take a leave of absence? Although you can be supportive, it is ultimately their choice.
8. They will need a support network
It helped to have people offer tangible ways they could help rather than just offering to be there if I needed anything. A couple of people brought me groceries or offered to accompany me to the doctor or brought me a meal. Some sent less practical but very welcome care packages of balloons or flowers or chocolates (if they’re on a low-iodine diet and you get them something they can eat, they’ll love it!).
9. They won’t always feel like socializing, but won’t want to be left out
Don’t give up on inviting your friend, partner or loved one to join in on social activities. Sure they may need to sit certain activities or events out, but because they say “no” a couple of times doesn’t mean they don’t appreciate being thought of or included. And when they do feel up to it, they will likely happily attend (even if they may need to leave early).
10. They may be tired
If they are hypothyroid or going through withdrawal of their T4 to prepare for radioactive iodine, they may be especially tired. Low key activities may be better received at this time. They may want to prioritize what they spend their precious energy on.
11. They may not feel sexually active
Unfortunately, this isn’t considered enough as a part of healthcare when it comes to how thyroid cancer (or any cancer for that matter) may influence intimate relationships. Sexuality is an important part of the self and Dr. Anne Katz has some great books on this subject: Woman Cancer Sex, Man Cancer Sex and Sex When You’re Sick: Reclaiming Sexual Health after Illness or Injury.
12. They may not be able to make decisions all the time or be tired of making decisions
I call this decision fatigue (I’m sure this term exists elsewhere). There may be moments where the person you love just can’t make any decisions, no matter how big or small. Asking what they want for dinner may just be too much to ask.
13. They may have to navigate work/career
Whether they want to continue working at the same pace, have modified work hours and duties or take a leave of absence, this is something they will need to consider. Thyroid cancer can be expensive and so realistically, it may be necessary to continue working.
14. They may need support navigating the health care system
All the appointments, doctors, tests, treatments, dates and medications are enough to leave anyone feeling overwhelmed and exhausted. They may want someone to accompany them to appointments and take notes or may need help remembering appointments. You can find the free thyroid transitions toolkit that I use to navigate my thyroid cancer here. My wonderful mother tracked my T4 and TSH levels, and all the other bloodwork results and filled in this toolkit with my results.
15. They know what they need best, but maybe not at the exact moment they need it
It can be frustrating when so desperately want to support the person you love and ask how you can support them but then they have no direction for you.
I had a communication journal in which I put notes to my caregivers and loved ones. This helped because the moment I could best articulate my thoughts in those early days after surgery tended to occur in the middle of the night when everyone was asleep. My brain fog was pretty bad and I couldn’t remember what I wanted to discuss the next day. For example, I made a note that I needed to look into my prescription plan to see what I had coverage for or that creamy pasta made me feel nauseous and I didn’t want it anymore. Another time, I noted that I sometimes didn’t have the energy to talk but that didn’t mean I didn’t want my loved ones around and perhaps we could work out a way to communicate when I was feeling like this.
16. They may feel like a burden and may need to be reminded that you love them
This is a real thing, especially if you’re helping them keep their day-to-day going. They may need reminding more than a few times.
17. Remember to take care of yourself
It can be very challenging to see someone you love go through a hard time. Remember to take care of yourself, continue to do what brings you joy and rest when needed.
18. They love you too and are grateful for you
Although sometimes it may feel like the thyroid cancer is taking over the conversation, remember to cherish the non-cancer related moments together.
19. They are still their own unique person – so one size does not fit all
They will need to come to terms with having cancer in their own way. Any or all of the above may apply but will vary from person to person. Listen to them and what they want or need, while also taking care of yourself.
20. Life will not always be about thyroid cancer
In time, life may be less about hormone doses and doctors appointments and how terrible the effects of hypothyroidism or hyperthyroidism are. Although thyroid cancer is something that will need to be monitored over the lifetime, it will hopefully start to make more sense and you will figure out coping strategies and techniques to live better and fully, embracing whatever comes your way.
With love and hope.
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