One of the things I never realized before my surgeries was how much my sensation in my neck would change. I had never had such major surgery before, so I didn’t really know what to expect. Now that I am all healed, I thought I share my experience for others who might be interested.

About 6 months out now, I have some sensation in most parts of my neck and cheek, although there is a small area on my cheek that is essentially numb. The sensation I DO have in the other parts is very distorted. For example, if I run a finger down the center of my throat, I get a “mirror” of that sensation running the same way along my jawline up to my ear. If my finger is cold, I also feel cold in the mirrored area.

Things are distorted in other ways as well. Right after the surgery, when things were still more painful, if I had something as small as a tiny hair caught in the ointment, it registered as a sharp, stinging pain. It felt much, much worse than you would think a hair ever would, but it never failed that as soon as Peter or my mom would pull out the tiny hair, everything would be fine again. Now, I don’t get nearly that same response (thank GOD), but seemingly little things can still seem much more painful than they should. A hair brushing across a certain spot can make me flinch, or if I touch a certain spot the wrong way, a dull pain will sound in my cheek for a few minutes.

One thing that’s challenging is the combination of numbness and pain. Because of the numbness, I can’t feel something brush against my cheek and may only feel it once it’s pressing hard enough to cause pain. Because of the lack of fine feeling, I also don’t know exactly WHAT is causing the pain unless I can see it, which can be disconcerting.

In general, it just “doesn’t feel good” to touch most of my neck and cheek. I AM doing a lot better than I was before though; I now CAN touch it, which was really hard to do before. If I ever feel like I’m getting too sensitive, or if things just start feeling bad, I do a little massage and then touch becomes more tolerable again. My friend Jonathan gave me a great book on scar massage he wrote, which really helped me think about my scars and sensation in a much more productive way.

I don’t wear necklaces anymore because the chain rubs right along my scar and it doesn’t feel great. I don’t wear earrings nearly as much anymore because the lower half of my right ear has such weird sensation that it doesn’t feel great. However, I HAVE worn earrings (which was huge), and the worst part was just getting them in and out. Once they were in place, I couldn’t even feel it them at all.

I’ve learned how to hold Emmie to reduce the amount she touches or scratches at me on that side. Baby scratches rarely feel good anyway, but they REALLY don’t feel good on that side. Luckily, it seems like we’ve figured out how to avoid most of this, since I hate pulling away from my baby, especially since she doesn’t mean it (she just can’t control her limbs yet).

Overall, things absolutely feel different, but I would trade every sensation again in a heartbeat to know that we got the cancer.