Lisa was diagnosed in 2012 with papillary thyroid cancer.
What was most surprising for you about the thyroid cancer experience?
I was surprised by how well I recovered from the actual thyroidectomy surgery itself – it was way less invasive of a surgery compared to others I’d experienced, although I did lose my voice for about 4 weeks (not as a result of any damage to vocal chords). I was also pleasantly surprised by how incredible most of the nurses, doctors and other medical staff were throughout my entire experience.
However, I was also surprised by how much of this is a mental struggle – not a physical one. I consider myself a strong, resilient person, and I’ve supported friends going through cancer, so I definitely had a good foundation of knowledge about some things (like how to be an advocate for your own needs and treatment, and good places to research information) but this wasn’t something I was at all ready for. I don’t think you can be. You have to take each day at a time.
What was most confusing and/or frustrating for you?
The most confusing/frustrating and sometimes painful thing was how difficult this was for my husband, and how hard it was on me that he wasn’t able to really give me the type of support I needed, when I needed it most. I tended to rely more on my friends – who were incredible (as friends will be!). My husband and I have a really solid relationship normally and while I always knew he was there for me, his way of communicating or emoting just wasn’t in line with the type of empathy I was expecting, and I couldn’t deal with his emotions with the situation while I was also highly emotional. It was only the day of my surgery that I truly saw the impact this had on him, and realized how afraid he was, which somehow was exactly what I needed to see. We were able to look back now and say “well that was rough”, and learn from it, but it was tough.
What kinds of things did you worry about?
I worried about what my scar would look like, what my quality of life after removal of my thyroid would be like, and that I would never feel like my naturally high-energy self again.
What was the most helpful and supportive?
The most helpful thing I did was to speak to other people who had been diagnosed and gone through treatment for Thyroid Cancer. I was lucky enough to know of someone through my work who’d gone through a similar diagnosis and treatment (although we all have our own story) and was able to have a very open conversation with her where I asked questions I felt I couldn’t ask anyone else. I also got some great advice from her, about things I may not have considered otherwise. I also was connected virtually to another person who’d been through the experience, which was a tougher thing (as she was still struggling) but it helped me see that there was a continuum of experiences and that my mental state going in to it would strongly dictate my end result.
What recommendations do you have for patients to help them feel more empowered/active in their care, and/or more in control?
Always think of questions you want to ask in advance of your appointments, and write them down. Keep a notebook and bring it with you to all appointments, and take the time you need to write down answers. Never feel badly about taking the time of a doctor when it is YOUR time.
You generally wait a long time to see people, so make sure you take advantage of it. Also, it is good to bring a friend or family member with you to big appointments, so you can ensure someone else (more neutral) is also hearing the answers, so you can debrief afterwards. You can also task that person with making sure you ask the questions you might be hesitant about. And if you are confused afterwards, or didn’t get to ask something, then find out who in the office (a nurse or otherwise) is available for questions – as often there is someone assigned to do this.
Finally – be kind to every single medical professional you come in to contact with. They have stressful, often thankless jobs, but they are your team. A little humanity goes a long way, especially when you need them to be your allies.