Well...I see I'm not alone here. There are some real troopers on this board. I myself have gone from seeing my GP in late July for swelling of my neck (sent me for a CT scan the same day), biopsies done the next week (results given to me by the throat surgeon over the phone, Stage IV A (T2,N2A,M0)to having a mediport and PEG installed two weeks later. I had 6 weeks of head and neck field (hyperfractionated)twice a day and 2 weeks of a boost twice a day. My M.D. said I was very healthy (other than...) and he wanted to be aggressive in his treatment.
We also did chemo at the same time on Monday's for 4 hours (7 weeks). I then moved to Richardson for the shaped beam (Novalis) for 2 weeks twice a day.

I had my modified radical neck dissection in November (just before Turkey Day)!

Last week I had them remove the PEG and port (my suggestion is have them during treatment). All in all it's been quite the experience! I can only wish you all strength and peace through your journeys.

Mine is not complete but, I WILL get there.

Welcome Big Red,

You have been through some of the worst! It sounds like you are doing very well. Good to see another sailor here as well

Mark,

Did you get a waddle "double chin" after the surgery and radiation? Will the swelling go down after a while or should I stock up on turtle necks?

Loved sailing...raced off shore on a 50' and had my own until last year. I will be getting on the Harley for the first time in 3 months tomorrow. Still trying to put some weight back on. Throats still very sore and swollen to the point of coughing up food into the nasal passage (yuck).

Good to hear you are doing so well.

Jim

I am not Mark, but another sailor, so I will jump in and say that yes, the swelling will go down. The extra skin on my neck made me nuts and I was almost to the point of making an appointment with a plastic surgeon to get my chin back, when just about overnight all excess flesh disappeared. As best I can recall, that was at about 6 mos. post treatment. Have talked to other people who have had that experience, so I can only counsel patience. As far as turtlenecks go, I think every single one of us bought at least a few. It sounds like you are doing very well, which is always good to hear.

Joanna,

Thank you for the reply. What part of the great northwest are you from? How did they ever come up with "waddle" anyway? The nurse said messaging it into the neck would also help. Ever been to the Rose festval in Portland?

Jim

Jim, that's properly known as the "Roast Vegetable." No longer live there, but am heading to Portland very shortly for more hyperbaric therapy. Have a good weekend and keep massaging gently, just one or two fingers in one place for a few minutes, then move to another place. Use lateral movements rather than circular. I did this obsessively and saw results very quickly. Happy weekend.

Hi all,

I can see we are going to have to ask if we can have a "sailor" section for us to post in.

Jim, I did have some swelling but not quite what I'd call a waddle. The swelling usually will diminish as the lymph fluid finds new pathways out of the head region. As Joanna has described you can assist in getting this fluid moving by very gently stroking your fingers across the skin of your neck in the direction the fluid logically should flow. Ask your doctor for a referral to a "lymph edema" specialist. Some physical therapists have had training in this field. You may have to ask around because this is a real specialty.

Turtle necks are a fun subject. I was once asked by an aquaintance if I wore them because of my neck scar. It was January and I think I embarrased her by mentioning the -30 temp. not my vanity that causes the turtle necks to come out. :p

Hi Jim and welcome to the group. I'm a relative newbie here and don't get to visit as much as I should. Hubby had his surgery in 7/01 followed 6 weeks later by radiation. He started noticing the lymphedema in his neck around this time in 2001. The doctors all told him it was common and normal and the only thing to do for it was massage it - downward. He did that fairly religiously and it went away.

Like you, hubby got back into riding after his diagnosis. We got in a couple of good rides and our first group ride before his surgery. He even managed to take his bike, '98 Electra-Glide at the time, to town about 4 weeks after surgery and passed his motorcycle test for his endorsement.

Since then he has moved down to an '02 Heritage Classic, mostly because he talked me into learning to ride my own (at age 55). I now have an '03 Low Rider and wish I hadn't waited so long. Riding is our sanity for sure! We hope to take a couple of long trips this summer if his treatment for his recurrence goes well.