Emotional about body changes

I've always been a person that, if I can't do anything about it, I move on.   I wore a high collared shirt for a few weeks after my original surgery, but soon decided that was silly, at least for me.  But I can tell you this about your scarring;  other people don't notice it nearly as much as you think.  I've had many people react in a shocked way when I tell them I've had all this surgery, even when I've been around them for awhile.  Their comments are frequently "now that you mention it, I can see it, but I hadn't noticed."  I don't think they are being kind, they truly hadn't noticed.

best to you

Pat

Hi Vicki,

I understand what you're dealing with. I'm a month out of treatment. I recall seeing myself after my surgery and freaking out! I looked like the Frankenstein monster with this huge incision and staples in my neck. I'm a musician (guitar/vocals) and I perform publically and I was thinking I'd never be able to perform again looking like that. In addition to fear of losing my voice, here I was facing what appeared to be a permanent deformity from the neck dissection. I'm blessed in that it healed beautifully. Unfortunately, due to the surgery, my left shoulder has been compromised. You can see the difference if you look.... and that's the key...if you look. With a shirt on, it's not apparent. However, I'm compromised physically and I don't know if I'll get back the strength and mobility I had prior to cancer. 

The whole eating thing is really hard to deal with. I'm feeding 99% via PEG right now and that's a difficult adjustment. What was once a great source of pleasure in my life has become an afterthought and unpleasent experience. I hope that changes as I heal and get back to eating solid foods.

I've been feeling much like yourself for various reasons. I believe it's common to feel what you're feeling and to mourn the loss of the life we had prior to cancer. I posted on another thread about how there are now three of us. The person we were prior to cancer, the person we were during treatment and the person we are now. Our lives change dramatically from the moment we hear the words "You have cancer" and there is a process we go through to acclimate to the new life we now have. I believe we'll always remember the person we were and eventually embrace the person we are now.

Positive thoughts and prayers

"T"

Hey Vicki, the variety of mixed feelings that you are experiencing are very normal.  Heck yeah, one has to go thru a grieving process, because we have experienced a major loss of, as you say, our old selves in so many ways, i.e., physically and functionally!  It is very important to acknowledge, accept, and share with your support crew, your thoughts and feelings about the losses, without dwelling on them.  At the same time, you of course need to adjust to the changes, create a new normal and keep movin on.  Other folks will not notice the scars nearly as much as you do, since you know where to look, but being selfconscious about them initially, is normal too; after awhile you will be too busy to remember to be self-conscious. 

You're only 6 1/2 months post treatment, and just beginning the process of fashioning a new normal for yourself, so you will be experiencing your losses more acutely for awhile.  Whenever I felt the pain of the loss/es, and sometimes still do (I really, really miss surfing) I allow myself to feel it for a brief period, then remind myself that I can still do all kinds of other things, and most important of all, "I'm just happy to be here."  So, there is nothing crazy about having the mixed grateful/sad feelings, but rather, it is normal, and alright; just don't dwell on the losses, and sadness.  I sometimes had to kick myself out of the sad pit, and remind me to stay focused on the positives, and make the very best of my situation.  The only feeling that I hope that you are able to banish, is that of guilt for having the other feeligs; there is no need to feel guilty about haviing normal feelings.  Here's wishing you all the best on your journey.  Remember, always, YOU CAN DO THIS, and Keep It Movin Forward!

PATRICK 

Vicki,

I use to estimate the age of people by their neck, now I know it is wrong and watch out for "bad mirrors" they make everyone look bad.  The "new look" is just  part of the "new normal".  I feel much better than my neck looks so I don't worry too much.

Matt

I was VERY self conscious my first few times out and about.  My incisions are so red and puffy still, I'm very swollen, my mouth droops on one side...I've had people ask if I was a stroke victim.  I calmly reply "no, a cancer survivor!"  People stare, they whisper and often times it's very rude.  I'm getting to where I honestly don't care.  I'm halfway through my rads and my surgeries were almost 3 months ago.  I am SO extremely happy to be alive, on the road to healing, and my family feels the same so they aren't bothered either.  I'm hit with nasty side effects right now, so I may comment on this again when all is said and done.  For now, I KNOW I look a mess, but I'm alive and thankful. 

Vicki

I looked in the mirror 4 days before Christmas in 2009 and thought my younger grandchildren will never hug me with a trach, drainage tubes, and staples ear to ear.  I went for a haircut soon after I could start driving again and there was a new girl cutting hair, when it came time to shave my neck I told her I was uncomfortable with a woman and a straight razor. I pointed to my neck and told her my wife caught me cheating and she sliced my neck from ear to ear. She about jumped out of her skin. Since then the swelling has gone down and I feel my face aged 20 years but the talking point is it happened above ground. Certainly cancer created more scars than any other of my life experiences but they all define what I am today. (a royal pain in my Katie’s ……….well we won’t go there)

Hey Dennis I also had to get rid of a wife (by making her an X) back in the 80’s. We have a saying in the Teamsters “No witnesses”. Just kidding………now there’s some Fed reading this yelling we got him. She is alive and well in Florida.

Enjoy the day

      Jeff

George_Baltimore said:

Vicki, I know EXACTLY what you mean

My disfigurement isn't a result of surgery to get the cancer.  That was taken care of by chemo and radiation back in 2004.  It's the gifts that radiation keeps giving me that make me feel I am not living.  I am existing instead.  I've had many crying jags (more pity parties I guess).  I had surgery in 2011 for necrosis of the mandible.  Before June 24, 2011, I could eat, talk and breathe normally.  These things I can't do anymore.  Everything I've tried to rectify the situation has led to failure.  I may have just a couple drops of hope left inside.

If you look at my avatar closely, you'll see that my chin juts over to the left.  That's because the bone graft failed so they had to take it out.  Two and a half months later they had to take the plate out because a screw worked loose so now there is nothing holding what is left of the jaw in place.  It looks worse without the mask.  About a year ago, when my lips were still puffed way out and my chin (actually just tissue that is swollen from lymphedema) was hanging over to the left, I was in line at Walgreen's.  A liitle girl of about 10 was tapping her younger brother on the shoulder to turn and look at me and she was laughing.  It hurt so darned bad.  There was no doubt she was looking at me.  I know she's only a kid but when I was that age, I wouldn't dream of doing that to ANYBODY!  Not even another kid much less an adult.  I felt like taking the kid's mother and shaking her and asking her if that was the way she was bringing up her children.

I wear crew neck t-shirts which do a pretty good job of covering the trach tube.  You kind of get used to people sneaking a look when they think you are unable to see them doing it.  Sorry, I didn't mean to unload all this on you.  It does get a little better if you hang in there.

Hey George,

I'm very sorry to hear about all of the stuff that you are going thru thanks to rad treatment, the gift that keeps on giving.  Since you are in Baltimore, not terribly far from NYC, if you were interested in another opinion from a remarkable ENT in NYC, you might want to check out Mark Urken, MD on-line, and consider getting an opinion from him about whether or not anything might be done to ameliorate the problems that you are having.  He removed a tumor from the entrance of my trachea (thank you very much radiation), and rebuilt the entrance of my esophagus in 2011 (which had been closed since radiation treatment in 2000; again, thank you very much rad).  I thought that I would offer the suggestion, because you never know.......*   I'm hoping that you can regain some hope.

PATRICK

George_Baltimore said:

I appreciate the info, Patrick

I will certainly keep it in the back of my mind.  I have an appointment set up for one of my original surgical ENT's to see if he has any other thoughts on my problems other than a laryngectomy.  I don't know at this point whether I'm ready for any more surgeries that could go wrong because with my luck, they will.  

I was thinking, there is one thing that I've done that's had a positive effect but not exactly the one I wanted.  Because of Bigfuzzydoug, I started seeing a chiropractor.  We decided to procede with treatments called the Graston Technique.  I was hoping that it was the neck fibrosis that was impeding my swallowing.  These treatments are very painful.  The chiropractor uses metal instruments and sort of "digs" into you neck to break up the fibrosis.  Right now, I haven't had a treatment during the month of May because I have a walking cast on my right leg (it's supposed to come off Thursday if the Achilles tendon has healed properly) so I can't drive to appointments.  I had two toes that were curling under which my orthopedics doc attributes to when they took my fibula out for the failed bone graft.  Once again, thank you radiation!  May 3rd, I had the two toe tendons snipped underneath plus my Achilles tendon snipped and lengthened.  But back to the chiro treatments (I do go off on tangents sometimes, sorry) I have regained approximately 30 degrees in neck range of motion to the right and left.  That was a benefit I wasn't expecting.  Before, I had to more or less turn my whole upper body to look to my right or left.

Well George, I'm hoping that you have a change of luck for your treatment outcomes, it seems like you are way overdue. I wish you all the best for that change.  The positive unanticipated results from the chiropractic sessions sounds great, I am glad to hear about that happening.

PATRICK