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Emotional about body changes

catluver96's picture
catluver96
Posts: 73
Joined: Jan 2013

Hello,

 Tonight I looked at the side of my neck with a mirror to see what other people see. I felt kind of shocked at how deep the crease is under my jaw. Added to that the swelling I still have under my jaw (surgery was Aug. 2012) and long scars. I've been struggling to feel comfortable with the loss of part of my tongue, my speech, eating (and tasting) food and all the odd feelings in my neck from a radical neck resection (and tracheotomy). 

 Seems like being grateful to be alive doesn't stop feelings I don't want to have. I feel like I'm greiving the loss of my old self while celebrating my new life after cancer. Then I feel guilty for feeling that way in the first place...because I am still alive and doing well. 

Sounds kind of crazy, I know.

I'm about 6-1/2 months post rad and chemo now.

 Has anyone else gone through an emotional healing phase after all the pain and sickness of treatment has passed? Do you feel sad for what was lost or changed, yet so happy and grateful to be alive at the same time?

Thanks,

~Vicki

longtermsurvivor's picture
longtermsurvivor
Posts: 1761
Joined: Mar 2010

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

katenorwood
Posts: 1808
Joined: May 2012

Hello Vicki,

I totally understand where your coming from.  Yes, I think that for some of us it has to be an acceptance that the old "what use to be" needs to be let go of.  It is kind of a grieving process, that doesn't get talked about too much, and maybe should be.  I know I've gone through stages of this.  I was advised by a good friend, to experience it, but not to let it rule the rest of my life.  So that's exactly what I'm doing.  Life is good, and we do need to give it our best shot.  Wishing you the best Vicki !  Katie   

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

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"

 

MarineE5
Posts: 746
Joined: Dec 2005

Vicki,

I'm with the others, I too had Base of Tongue cancer and was self conscious of my appearance. Besides, I'm a Marine and my morning motto is " Mirror,Mirror on the shelf, who is more handsomer then myself?" so, I now have some scars, like you. I had the Trach, radical neck disection, the turkey neck, 9 inch scar or more running from the center of my chin to the back of my right ear,etc.

Like Longtermsurvivor said, most people don't notice it as much as we do. The swelling under your jaw will eventually go down, if it doesn't see if you may have Lymphedema going on, it will affect your neck swelling as well, causing your throat to narrow and may play into your swallowing. It did me and I learned stretching exercises and gentle massage from a cancer physical therapist that worked for me. It is in the Super Thread on the front page here. Here is the link to the exercise/massage.

http://csn.cancer.org/node/196680

My Best to You and Everyone Here

patricke's picture
patricke
Posts: 435
Joined: Aug 2006

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 

dennis318's picture
dennis318
Posts: 349
Joined: Feb 2010

i woke up with a trach, tubes after my surgery, what the hell happened, and what was sewn onto my neck pinching me.....you have alright to be going thru the roller coaster emotions, i came home with a trach, gagging and watching this thing slide in and out of my neck, trying to hide it, no more singning, no more saxophone playing, talking, barely, I sit and cry, Ia guy coming from a gym looking his peak at 52, 140 lbs of skin, bone, and a wife that cheated on him to boot. yeah you read write...there's alot more to each of our stories, some can't contend with cancer. i fought the trach, i breath alot harder, but I'm radiatied and burnt bad. can't talk very well, I 'm divorcing my wife, and have dissability. life is turning aroung slightly, but i fight harder everday, there are alot of out there, hang in there honey, it does get better....or your life doesn't seem as bad as someone else, if you need a anti deppressent like i take , do it...i feel half way human taking it finally, best of luck, we are here for you....Dennis

I did finally get rid of the trach, I am in the process of getting rid of the cheating wife. LOL

CivilMatt's picture
CivilMatt
Posts: 2859
Joined: May 2012

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

George_Baltimore's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

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.

patricke's picture
patricke
Posts: 435
Joined: Aug 2006

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's picture
George_Baltimore
Posts: 303
Joined: Jun 2009

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.  Laughing

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.

patricke's picture
patricke
Posts: 435
Joined: Aug 2006

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

 

 

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

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. 

catluver96's picture
catluver96
Posts: 73
Joined: Jan 2013

Thank you to everyone for sharing your experiences and feelings. You make a difference in my life. I think about things said here and feel understood. I learn from you and am encouraged.

I did find the exercises and plan to print them up for use. I haven't had any physical or speech therapy, so this is very helpful!

Be well and happy my friends. Smile

~Vicki

Duggie88's picture
Duggie88
Posts: 526
Joined: Feb 2010

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

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

Hi Vicki,

After all of my surgery (partial glossectomy, neck dissection, temporary trach and partial mandibulectomy) when I first saw myself in a mirror I about lost it right there in the ICU.  Although all the docs and nurses said the scars will fade in time, I didn't believe a word of it.

Now 2-1/2 years post surgery, the scars have faded, the swelling is much, much better and I don't feel self-conscious being out and about anymore.  I am happy and grateful to be alive.  It does definitely get better with time.  

Do I miss my BEFORE life ?  You bet I do...many of us end up with mixed emotions, but you will come to terms with it.  Don't put too much pressure on yourself.   Right now your #1 job is to work on your recovery.  The rest will all fall into place.  (And don't be afraid to ask for a little Rx help for the emotional part....Effexor,  Xanax or Lexapro)

Good Luck, sounds like you are doing great at only 6-1/2 months post.

 

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