Hello, John. Along the lines of nutrition, you probably should eat everything you want ahead of time as you will probably be living on Ensure or some such nutritional supplement for some time once it gets going. Any food you think you will miss, eat it now.

John,

It sounds like you have lymphedema in your neck. This is due to removal of the lymph nodes and the accumulation of lymph fluid which has to find a path for drainage.

Have you addressed this problem with your doctor(s)? There are therapists that specialize in massage therapy which will help drainage paths to form. You can be taught how do this on your own.

Please look into this and you will feel better after the swelling goes doen.

Jerry

Thanks Catherine. This is what I have been looking for.

I will look into the massage therapy. I was unaware of the extent of the dissection going in. You have me thinking about why "The Team" has not spoken to me about therapies. My arm has started feeling a little weaker weeks after the surgery.

Maybe they want me to finish the radiation first.

John

I was so happy to be spared a neck dissection the first time around. My second round with Cancer did require a ND on the left side. My team started me on physical therapy to strengthen the shoulder muscles plus get scar massage BEFORE they did more radiation but then I also had surgery to remove the second tumor at the base of my tongue.
Radiation will really fatigue you but at a minimum rotate your neck every day on your own. The Physical therapy exercises were rough. The hardest and most painful for my neck was the "Shaker exercise": Lay on the floor flat and raise your neck to look at your feet: Hold this for one minute, then rest one minute, then repeat two more times. Next: Raise and lower your head 30 times. CAUTION; CHECK WITH YOUR DOCTORS FIRST to see when you should start PT or even attempt the Shaker.
the neck dissection has left my left side permanently numb and with skin like petrified wood- although the scar does make look like I had a dangerous past where my throat was slit in a barfight gone bad

Do what you can on your own if this is their plan. I tried doing normal routine things throught all they pitched over my plate and I came out of things half way decent LOL but never was normal. LOL Have a good day and just try things and after ask your Drs if this is OK.

I started physical therapy shortly after both neck dissections and continued twice a week through radiation. It helped with the lymph drainage, strengthening the arm, and massaging the scar. I also had intra and extra oral massage to help avoid trismus. Look into it, I highly recommend it.

If you arm and shoulder are starting to bother you, you are probably putting too much drag on it. Don't let it dangle for hours. Make certain your desk chair has arms. Put a pillow under it if sitting on a sofa. If you are walking a long distance, you may want to support with hand under the elbow. This is of course until the PT gets your strength back. I did not have any SHAKER exercise or any other torture that Charm describes. My sessions started with 20 minutes of moist heat, followed by neck massage and arm stretching movements, then strengthing exercises and closing with a back and neck massage. Almost as good as a spa.

Also read in the GETTING THROUGH IT PROJECT forum, the thread 'What I wished I knew'. This was the basis for the draft copy and is rather random, but has a lot of info.

I am one of the few around here who had only radiation but it was XRT. You probably will have IMRT. I think it is easier on the ones who have no chemo.

Take care,
Eileen

Hi Eileen

Thanks

Hmmmm. I am told and read great things about my doctors but no one is really saying these things to me. These services like PT and massage exist there but I simply got a brochure. Is that typically it? After I talk to real patients I hear recommendatons and advice. Talk that others appear to be avoiding---- or waiting for me to talk about it.

Kind of weird. I would think someone would be selling me the package.

My friends wife says I look like the bar fight happened. Funny how after quitting drinking (2yrs), smoking (3yrs) I finally start to look the part.

The neck is tight and feels weird. I tend to get headaches after driving alot and turning my head alot. My arm is not too bad, but when I lift it I feel a place where it seems like energy is just pouring out of me. When I let my arm down I feel ok until I really get tired. Another weird thing.

Thanks Charm

Jim or anyone,

Books by Gary Anderson. Cancer 50 Essential Things to Do?

You guys read him? Sounds like he makes sense, but on the web I just see him asking for donations.