Going into surgery, I really had no idea what to expect. No matter how many questions I asked of my surgeon, I could never quite pin him down to how much recovery time I would need after surgery. I understand all people heal differently, but I’m a planner and I have kids that I needed to schedule help for. So I am going to share my Thyroid Cancer Surgery Recovery story in hopes that I can help other’s like me, who want an idea of what to maybe expect. Just note, this may not be what your story looks like.
One of the very first shocking things to discover about my Thyroid Cancer surgery (way easier to say than Radical Modified Neck Dissection – a.k.a. removal of my whole thyroid and many of my lymph nodes in my neck) was the amount of wait time to get into surgery. I was diagnosed in March 2015, but not scheduled to have surgery until mid-May. I am pretty sure one of the hardest parts of surgery was the waiting period. “Hi, you have cancer. We are very sorry. But we will not be removing it for two months.” That was hard to swallow for me. Not to mention the draining fatigue that came with the waiting and cancer. It was worse than early-pregnancy-tired!
But the waiting time helped me PLAN!
I am incredibly lucky to have had a large rally of people support me and help me function through the whole process. From people willing to step in and watch my kids when I was too tired to play or recovering from surgery, to people setting up “Bring a Meal” sign up forms for me and those that “babysat” me after surgery, there are too many people to thank.
I was in the hospital for roughly 3 days after surgery. This may be longer than others, as I was having a really hard time not throwing up all the pain meds they were giving me (umm.. throwing up after major neck surgery.. not fun!). After going home I scheduled to have my children go to grandma’s for about a week. I’m a single mama, with small children, young enough they don’t know that hugging and kissing mommy’s boo-boo would be painful, not helpful, so to grandma’s they happily went! Knowing that I was going to have multiple medications to juggle and a rough time getting up and out of bed, I planned to have babysitters to watch me for about a week.
Friend’s volunteered to stay overnight and manage my meds, warm up meals for me, force me to eat, get me ice, and help me entertain my stream of visitors for about a week to ten days after surgery. The “Bring a Meal” sign up page was a life-saver in the sense that now the ‘babysitting’ friend didn’t also have to worry about grocery shopping and cooking.
I highly recommend using a site like: https://www.takethemameal.com/ to set this up.
Another huge recommendation I have for post-surgery: use a white-board marker to write on a bathroom mirror, or write out on paper all of your medications and when/dose to take. I found that when I was really tired, or woozy from meds, or my ‘babysitters’ were switching out, meds got really confusing. “When was the last time I took my calcium??”
Speaking of calcium, if you ever notice post-surgery that your lips tingle or your hands feel numb (I described it as my hands feel like I have mickey mouse gloves on or they are swollen, but they aren’t) your calcium levels have dropped and you need to tell a nurse immediately. Easy fix: chewing up a lot of tums a few times a day until your para-thyroid kicks back on, but it is important to tell people about the symptoms (I just thought I was too high from the morphine!).
Now, let’s talk about how you are going to feel after surgery
I was pretty frustrated that I was never told what to expect after surgery. I don’t do well with the unknown. The downside to a Modified Radical Neck Dissection, versus just Thyroid Removal is they peel the skin back to reach in there (ick, I know!). Unfortunately, with this kind of surgery, there is a chance of nerve damage. I was one of those lucky ones who got this (insert sarcastic voice). No one warned me of the numbness or burning sensation that was about to come. About 4 days after surgery, my nerve damage began to show symptoms; basically think of what it would feel like if someone took a hot curling iorn and rolled it down your neck from your chin/jaw line all the way to your collar bone. Not pleasant.
The painkillers they send you home with don’t make it go away, just make you care a little less about it. Ice and staying in the laying down position was the only thing that made the burning/tingling tolerable. The longer I was standing or sitting upright, the worse it burned. So I basically entertained visitors and spent all of my time laying in bed for about 10 days. My friend made me a “get well” basket and included this cute little icepack that basically saved my butt. As people came to visit, my request was always to bring a bag of ice because we were going through it so fast. I’ve been told the tingling is the nerves regenerating and so my feeling should hopefully return on it’s own. About six months later, the tingling was gone, but the numbness still bothered me until I found this product, BRIOTECH which I used twice a day for several months and it seems to have restored almost all of my feeling, not to mention also greatly reduced my scar!
Another thing they don’t tell you; if you have long hair like I do, expect that they use a glue-like substance to slick it back during surgery. I understand they need to keep the surgery site sanitary, but really, glue in my hair?! Not to mention, hey, no showers for a few weeks from basically waist up. So try to figure that one out. Here I am, entertaining visitors in my bedroom, laying in bed, with my neck cut open and glue in my hair. When one of my close friends, who happens to also be my hairstylist, called to see how I was doing, I may have cried a little over feeling very ‘non-human’ and gross because of my hair. She was such a saint! She engineered a way to wash my hair for me without getting my neck wet (as ridiculous as it looks!) and brushed/styled it and everything. That was the first time I felt normal in over a week! Made such a difference. Honestly, it took about two weeks to get the glue fully out of my long hair.
Overall, I have no idea how I could have survived the post-surgery portion of Thyroid Cancer without the help of my friends, family and people at my church. They all rallied around me to support me and take care of every little thing. Your story will probably be different, maybe you won’t have as long of a recovery as I did. Hopefully you won’t deal with the nerve damage or the glue in your hair. No matter how your story is different than mine, I hope that sharing mine will help you prepare for the journey you’re about to go on. It does get better and it is all worth getting the cancer removed. This is the hardest part in my opinion of all the treatment you’ll deal with.
Have you had this surgery? What things would you recommend to others before having it? Leave your thoughts and recommendations in the comments below.
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