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| me and my darlings at Mt. Rainier |
First and foremost, the surgery is absolutely scary. There's no denying the horrific stories you'll find when you search online. But when you think about it, the majority of people like to vocalize their complaints (with service, be it food service, customer service, etc), but very rarely do you hear people vocalize their happiness. People don't often go out to eat and then boast about it online when they've had a great server, but yet when their service is bad, they are quick to go online and bash the company. So that means the majority of stories you'll read are just that, folks who've had a horrible story, surgery or recovery. And while that's never a good thing, the sheer number of stories out there makes it seem like every single parotid surgery ends with tragic results. That's absolutely not the truth; I'm living proof of that! And that's mainly the reason I started this blog... to track my surgery and recovery, and to provide a (what-I-hoped-would-be) positive story for others going through the same thing.
My number one recommendation is to get a second opinion once you've been diagnosed with a parotid tumor, or any tumor or disease for that matter. I realize it takes time to get into these specialist's offices (trust me, I've waited months to get into some of the best!), but you can even have your primary doctor call them and try to get you in at an earlier date if they don't have anything for a while. If nothing else, you must absolutely get a second opinion if your doctor recommends surgery. So, ask around for another ENT in your area, even if it means traveling an hour or so to visit them. It's worth it to have another opinion and be sure you are comfortable with how they'll do the surgery.
Another tip - ask your surgeon if they'll be using a nerve monitor during the surgery. This seems to be commonplace these days, especially in the United States, but you never know. It's worth asking. And if they aren't able to do that, definitely get another opinion. That nerve monitor alerts the surgeon when they are getting too close to the facial nerve. Ask your surgeon lots of other questions too. Don't be afraid to ask about the surgery, ask for details, and even ask if they have a previous patient who you could speak with about their recovery. I tried this but was told nobody has ever been willing to leave their name and number for folks to call with questions, and with HIPPA in the United States, doctors can't just give out anyone's name/number.
If you've got an upcoming appointment with your ENT, write down all your questions and ask them. I've been known to show up with my notebook of at least 15-20 questions for each appointment. There were yes/no questions, "if yes to #3.... if no to #3..... " questions, diagram questions, and even drawings I wanted to show me exactly where the incisions would be made. I had all sorts of questions over the years as we watched the tumor grow, and then even more questions as I read the horror stories about surgeries.
You can call and ask your ENT's nurse these questions too. And believe me, once a surgery date was set, I called my nurses every few days with more questions. The girls got to know me on a first name basis and they were AWESOME in helping calm my fears of the surgery. And they honestly spent so much time on the phone with me, sometimes telling me they'd call back at the end of the day so they could talk for longer periods of time. It was exactly what I needed for such a scary surgery. It also saved me the hour trip down to the city just to ask the surgeon these questions.
Allow yourself to have breakdowns. They are normal and healthy. Cry and let it out. Trust me, I've had plenty of them - usually right after I put the kids to bed and they had given me great big hugs. Sometimes I cried to my husband, but I was sure he had heard enough of my fears, so I usually just locked myself in my room and freaked out alone.
And once you've allowed yourself time to freak out, put on Bob Marley's Three Little Birds and think "every little thing gonna be alright". That song still brings me to tears today when I hear it because it was truly my mantra in getting through all of this.
My last suggestion would be to for you all to start your own little blog to follow your journey. If nothing else, it can be a place for you to track your progress during recovery. And believe me, the first few weeks it feels like you're making no progress at all, but then you can look back and say "hey, I wasn't able to do that just 3 days ago..."; every little bit further you can turn your neck, lift a pasta pot full of water, sleep on your side, pick up the kids and just go about your daily activities, you'll feel that much better about your decision to get the surgery.
One other insight into my personal life - this man below is my husband. He's been my rock, my shining star, my courage to go on. He's provided me with strength during times I had nothing left in me. Not just during this parotid tumor craziness, but in other periods of my life when I've felt defeated, deflated and just about as low as I could feel. I am so blessed to have him by my side.
We all need someone we can lean on, someone who can hold our hand during times of pain, sit with us at the doctor's office and take notes, and help us out when we come home from the hospital. For the record, my husband was a lousy note taker (he was overwhelmed with all the medical jargon tossed around!), but my mom stepped in and went with me to make sure all my surgery questions were answered. So find that someone in your life who will help with those things. Don't go at it alone, it will only stress you even more.
*the pictures above were taken after my surgery, so you can see my smile was not affected, and really, my face didn't change at all. The small scars on the side by my ear, and down my neck, are so very minuscule now, I hardly think about them. And I never worry about anyone noticing, because it's really not very noticeable at all!
