Aug 16, 2012 - 1:59 pm
Hello everyone! I haven't been on here for a very long time, which is good because that means I've been busy living again! Just a quick refresher: I was diagnosed with Metastatic Squamos Neck Cancer with Occult Primary in my right tonsil which had spread to all of my right lymph nodes and my left tonsil on December 1st, 2010. I had 33 radiation treatments, two chemos, and a selective right neck dissection in May 2011. For any of you that are in the process: you can do it! I'm at almost 18 months out and all is clear. Now. About those residual side effects that I have. I have very little spit. And this results in kind of a sore mouth and throat most of the time. Nothing unlivable. And I have found some things that help. I still haven't gotten my taste back, I can do salty, no ****y or sour, too painful. And sweet is hit and miss. (I told my ENT on Wednesday that my behind thanked him for this, my female hormones.....not so much) Chocolate is totally out, it's like eating a crayon. (Ummm yes, I vaguely remember trying to eat a crayon at some point in my childhood and it's very similar). Life has now gone to a "new normal". My eating habits have changed. (I LOVE untangy fruits and lots of new vegies on the menu) Of course, I stopped smoking. And I exercise every morning. I am much healthier than I was before cancer. And I am happy :) I have an amazingly perfect new (year old tomorrow) grandson who has made every single thing I went through worth it- just to see him smile at me with his little two toothed grin and say "nana"! So. There is indeed life after cancer. And it's an adjustment. But it is good!
Here is the main reason for my post: I'm looking for opinions, similar experiences, etc...from anyone who has gone through this before me. For about the last 8 months, I have numbness and tingling in my right shoulder and arm. Sometimes it aches up into my ear and down into my middle finger. The muscles on that side of my neck and back are tense and swollen, straight to the point, it hurts, kinda like a toothache-ish pain. My docs say there is a mass in my neck which they believe to be scar tissue and believe to be wrapped around a nerve (all my CT scans are clear but you can feel it) and you can visibly see the muscle swelling. I'm on gabapentin, 300mg 4 times a day. This helped immensely for a while but is not working so well anymore. I haven't had an MRI yet, I'm trying to avoid that cost since they are relatively sure what it is. I guess what I'm wondering is: has anyone else had this? What did it turn out to be? What was the treatment plan? It's not horrific pain, just miserable constant pain. Kinda like water drops on your forehead (ugh?). Ultimately, I would like to be off of all meds and be done with this, but at this point, I'm willing to do whatever the doctors say to make it stop. Any ideas?
Also, if anyone is just starting treatment or has just been diagnosed, please feel free to ask me any questions that you have, I'll try my best to answer. Or if you just need someone to vent to, I can help with that too! Hope everyone is doing well and big hugs to all! Looking forward to hearing from you!