Hi, my name is Greg. I am from Cape Town SA. On the 16th February 2010 I underwent a 16 hour operation in LA. A radical bilateral neck dissection, full glossectomy and resection of the mandible from angle to angle.
I am sure there are others who have suffered the same fate and wanted to know how you are coping. This way of life is pretty new to me, but reckon I am doing ok.
Although I can still swallow, I still make use of my g-tube (still have fluids going down wrong pipe). I recently had a mri and all is clear. If all goes well I am hoping to return to LA to get my lower implants done.
Thanks for reading, Greg.
Hi Greg!
Welcome to OCF, glad you found us!
It sounds like you are doing well. Are your doctors discussing radiation?
I can swallow pretty well now but had the same issues as you do with fluids going down the wrong side. Have you tried using a thickener in your fluids? I've been using a nectar thickener and slowly have been able to dilute it to an almost water consistency. Funny we have to retrain ourselves how to swallow, people take it for granted!
Glad your here with us, there are many wonderful people on this site. Ask any questions you may have, someone is bound to know the answer.
Yeah on the clear scan!
Thanx for the welcome.
I forgot to mention it, on the 7th May I had finished radiation (46 sessions, 2x a day) and chemotherapy through the duration (erbitux). The radiation was harsh towards the end,thought that would kill me. The only side effects from chemo was a rash over my entire body.I itched every day and that is only clearing up now.
On the eating side, I still have issues over that. Its not easy watching my wife and boys eat while i am stuck with fluids. I'll get over it. The worst is getting everyone to understand me, i know that will take time.
Hi Greg. Nice to see you posting on the forum. Im glad you have joined OCF, you will find a few others like us on here. Things do get much much better the longer you are post treatment.
I sent you a reply to your private message.
Best of luck with everything
Welcome to OCF! You'll definitely find that everyone is very supportive!
Greg, welcome. Glad you found this place and even gladder that your scans are clear! Are you seeing people at UCLA, USC or somewhere else in LA? (I'm assuming that refers to Los Angeles... but I suppose it could be Louisiana! Or am I missing it entirely and you're speaking about somewhere in South Africa!)
David 2
Like everyone else...glad you found us and double glad you've gotten a clear scan.
Hope you continue to heal and can eat normally agin.
Welcome Greg!
I'm glad that you found this forum, it truly has helped me in more ways then I can count...not that I can count very well without fingers/toes but that's another matter.
Life is definitely different after surgery but the way I look at it, as long as I'm breathing, it can't be that bad! The support I've found on this forum has helped me cope and deal with my new situation and has helped catapult me into truly living life again after being severely disabled by this disease.
Eric
Hi David 2, yes I was in Los Angeles for 4 months. The op was done at Cedars Cinai, it was a group of doctors who dealt with my procedure. Unfortunately things were looking pretty bleak for me in CapeTown. After the first op the doctors here did not give me much hope for survival, that is why my wife took it upon herself to get a second opinion and this is where I am today. On the bright side we get to go to LA from time to time as she won't let anyone touch me here.
I do have so many questions, but I am sure that in time they will be answered.
Greg
Hi Greg, I to am new and my big operation was 9 weeks ago, it was hell! go that clear scan and the people her seem to have a depth about them that is rare. You are in a good place to ask the questions you need. Its like one minute your normal and next your life turns to mud and know one really gets it. Welcome!!!
Greg, yes, I should've mentioned Cedars too in my earlier post. They are certainly great and I'm glad you were able to get there for treatment. Your wife sounds like a champ!
Next time you're here if there's anything I can do for you please don't hesitate to send me a PM.
D2
Thanx David 2, we should be back in LA in September if all goes well so I will look u up