Hello and first I just want to wish everyone a fantastic new coming year...that 2009 will be full of love, happiness, great time spent with family and friends and new beginnings.

Now, I'm doing well in the recovery department--at least I think I am, that I'm basically experiencing ailments that most have felt in this process. Just a couple of small ones but a little annoying.

First, the Lymphedema...I finished txs on November 4th, 2008 and had no problems with swelling after healing from surgery or after radiation...Okay--I did have swelling the last few days of radiation but it went away fairly quick. But, within the last two weeks or so I wake up with a swollen face and neck on the left side...where the surgery was. Is the Lymphedema happening because of the surgery or the radiation? Or is it happening because I had 14 lymph nodes removed and radiation is now affecting that area? I called up my RO and he said he was surprised I haven't complained about this sooner and that it's a normal issue that I will be dealing with this for the next 4 to 6 months and that it will get better in time. I forgot to ask--does it just get better with time or does it go away with time? I'm hoping it goes away and that 14 nodes removed won't make much of a difference in the long term. My Mum-Mum would always get mad at the doctors because of surgery--I remember her yelling at one surgeon who was going to operate on her son(my Uncle)--"If that's not the problem you better be able to put it back!"...She felt that everything was there for a reason and she hated when a doctor said it won't hurt to remove it or that we don't really need that anymore...blah..blah..blah....OH MY--God help the doctor that said that to her. Removing 14 lymph nodes and 1 salivary gland for biopsies would not have flown with her...Just because they were swollen or lit up on the PET scan and maybe they have cancer would not have been an answer..it better be cancer or she would have demanded other tests...Needle biopsies and such...No surgery for a maybe...When mine came back clean I was like, "Thank you God!" Basically, for those of you that have had Lymphedema--does it improve or go away with time?

Here's another issue, I space out...I zone out...and it seems to happen when I'm with people or parties/get-togethers. We will be sitting at a table and I'll just end up staring in space and I don't realize it until someone snaps me out of it. It's like I'll focus on someone or something and become hypnotized. It just happens and I can't seem to control it. I never did this before and I'm a little worried that I'd do it while driving...Could I be falling asleep with my eyes open? I know I lost a lot of weight fast and that I have been under a lot of stress--you can see it with my hair and weight. I didn't loose my hair but overall my hair became very thin through this ordeal. Everyone says it will come back as my nutrition gets better. I joke around and tell everyone I suffer from radiation brain and can't help it. My GF jokes back and says great my BF is going to be a bald zombie. But the zoning out--has anyone else have this issue? At times I don't sleep well (I've always been a very light sleeper) and I think when we do things I get tired and that I'm actually falling asleep at the table...so to speak. Does this get better or disappear?

Another thing, I don't seem to listen or hear things correctly anymore. My GF told me "NOT" to wear the red sweater with the khaki pants. Needless to say, I showed up wearing the red sweater. She told me no Christmas presents this year...just cards and Cape May for two days. Well, I forgot the card, at least I got her a gift. And finally, we were going to bed and she was putting lotion on her face and I asked are you done or need the lights on? She goes not yet leave the lights on...WELL--I shut the lights off on her!! She was like why do I even bother telling you anything--YOU never listen!!...I actually thought that was really funny!! Even though I didn't do it on purpose. I don't mean to do these things but it's coming across like I'm only here for myself and that I'm behaving very selfish in certain circumstances. I seem to forget things.

Lymphedema, spacing out, thin hair, doing as I please and not listening or hearing properly...Oh yea, every-so-often I have poor balance. That unexpectedly I have to catch myself from not falling over...it usually happens when I'm getting up or something but it's sporadic. Did this ordeal of getting cancer change my personality and make certain traits more pronounce? Is this the new me? Can all of this be Thyroid related? My GF thinks I need to talk to a psychologist to help me snap out of these things. I'm a little perplexed. I don't mean to act this way but it does come across very deliberate...Okay--I think that's funny for some reason..LOL...Now, I'm being insensitive!! LOL...OH boy.

Ray, I put plywood under my matress to raise my head about 5 inches. This helped the lymphedema quite a bit. I was able to take the "ramp" out after a couple of years. I did not have a lot of swelling but I certainly could feel the puffyness. Even today my right face will be a little puffy from time to time. Overall it should get better. You can learn some simple techniques to help re-train the lymph to pass through the scarred and radiated areas. Ask your doc for a visit with a lymphedema specialist (yes there is such a thing) usually a physical therapist specialty.

As far as the spacy memory thing, many of us experience "radiation brain" minor memory problems etc. I have some minor balance problems too but they are very minor. All of this could be Post Traumatic Stress too. Do a lookup on that subject and you'll likely find you have some similar symptoms. PTS is not just for GI's! I personally think it is more of an issue for the younger folks.

Another thing that your doc might not have mentioned is that he may have removed a major vein along with the neck dissection. I am pretty convinced that for me, this took time for my brain to adapt to the different blood flow to (and from) my brain.

Last, yes your thyroid could cause some of what you describe. It would be a bit early for you but I'd get checked any way. It is a simple test. While getting that test have your doc check everything else then you can relax a bit.

Wow I am having these little issues occur and I didn't have radiation now that's scarry!! I have the puffy problem and am almost 4 months out of surgery (55 nodes removed) One morning I woke up and it felt really wierd almost like a popped pimple the pressure had gone away in certain areas. The swelling was less but it was replaced with pain not just the nerve joining type but real throbbing pain. I thought it would be over by now the pain anyway I understand recouping issues... Also when I stretch, it sometimes feels like pulled muscles and other times feels fantastic. When I massage my jaw line and area of dissection I get a wierd taste in my mouth and not quite sure what that is all about either.
My nurse seems to think that a lot of my issues including pain in my ear and jaw and headaches have to do with lymphedema so I wait to find out...

The spacing out of loss of concentration happens to me a lot. Especially when I am talking and there are other things going on around me...I forget what I am talking about and try to cover up and most times it is pointless cause it is so obvious that I am spaced...So rather than fight it I just appologize and feel really lame...

My hair well I think that for me is just another age and herriditary thing...My mom has worn a wig for years and years...just now is she starting to wear a more realistic one(took a lot of encouragement to try new things)...anyway as you can see I still ramble but again not sure if that was much more different from before surgery.

All in all radiation can have some very interesting and wierd side effects...but please some insites as to having those side effects without radiation...Chalk one up for the blonde society~~ (ok maybe grey society lol). I guess we just have a long road to travel yet..

Ray,

It could just be old age!!! lol

Thanks for the laugh Dave!! LOL

I am going not grey but white...I notice more and more white hairs on the top of my head....


Mark, Thank you for your response...

Ray...

I call those things the "little lovlies". Its all pretty common after effects. Not sure what the cause is. I have come up with a list of them....

dizziness

sleeplessness

sinus problems, like always having a cold when you arent sick

eating and your nose starts running so you have to blow it throughout your meal

not focusing or able to process info correctly (your example of the turning off the light on your girlfriend) for me I will ask my kids the same question 3 times within a few minutes, or I drive to the store only to forget why I even went

sore throat, caused by sinus problems

fatigue




You arent alone in your after effects. They really stink, but gotta think of the positive. Every one of us who has these little lovlies are lucky in our own way. Im more than ready to move on and have 2009 be a great year

I forgot about my sleepness nights. Everything is sporadic though...

Are these lovlies with us forever? I remember you telling me this once before...If I ask this again you guys are going have to direct me to the nearest giatrics center.

I've never been this way before and it seems to be worse since I finished txs. Maybe I was so beaten up through txs that I didn't notice any of the side effects. The balance thing is new..I know that much. I also swear my eyesight is a little off too. And I do have some aches and pains...Heck, maybe I'm just being more sensitive to my body and noticing every little thing. Dave might be right...it could be just aging...LOL.. I am approaching 40. OMG

In my case, being 65 1/2, I KNOW a lot of it is old age!!

In a younger person than you, the momentary spacing out might 'petit mal' seizures (My cousin's son has it) which is treatable with drugs.

Might be time for a good, old-fashioned physical where the doc looks at the whole of you, not just pieces...

Mark--I was telling my GF about the major vein theory and she wasn't buying any of it! LOL

I'm blamming so much on my OC that people are starting to tell me to shut up and snap out of it...Oh well...The weird thing is, I'm not doing or feeling any of these things on purpose...And part of me wants to snap out of this but can't. I was never really sick before this OC..nothing major.

The only thing I can say is that this month is a lot better then last month and I'm sure that the next will be better yet!

Thank you for the support guys

Ray,

You're a babe in the woods re recovery but know this..a year from now you will feel a lot better than you think you feel now and 2 years from now you will feel a lot better than you will feel a year from now.