Hello, all!
I've been through a few WEEKS of trying to come to grips with my lip surgery that (I consider) quite deforming.

It's been really a challenge and has even adversely affected my overall WILL TO LIVE. If I'm a freak, then I feel less motivated to get out in society- to "see" and "be seen".

I haven't even seen a single member of my family since my Sept 23 operation. The problem is, they haven't even responded AT ALL to my emails and phone calls letting them know what's going on.
Half of my bottom lip has been surgically removed, the upper has been removed for 1/2 the distance of the lower, and then turned "upside down" into its' place. IT'S AMAZINGLY HORRIBLE!!!! I have a scar from my nose to my chin, with a smaller one from center of bottom lip to chin- it's very swollen- I can hardly eat- and then, just the other day, the stitches holding it all together came out (with a little help from a fork), and now I have a 1/4 inch fissure at the center of my much mishapen lips!!

I feel like the science fiction guy who gets transformed into a blob of jelly...."I have no mouth and I must SCREAM"!!!!

I'm TERRIFIED to face the world like this and am currently trying to be flippant and "who cares" type of thing, but that is not AT ALL my true feelings.

I MUST KNOW how to approach my family and TELL them that I NEED support!!! We've never been close and when I was first dx'd in '03 I got exactly ONE visit from a family member....over a whole SUMMER of weekly chemo hospital stays!!!
I don't want to alienate them, but I need to let them know that I really NEED THEIR HELP at this point. Any suggestions are greatly appreciated.

You guys have become my "real" family.

many thanks!
Gordon

Gordon,

I'm so sorry to hear all that you are going through - mentally and physically. I can understand your feelings of not wanting to face the world. My sister, Kim, lost the entire right side of her neck (literally nothing was there) and she dreaded facing people on the way to her appointments. I don't know what advice I can give you about how to get through that. Keep in mind that in time, the scars will fade, the swelling will go down, and you will heal.

As for the family situation, I can completely relate. We had several members of our family disappear while Kim was battling her cancer. It's very stressful and hurtful to feel that your family doesn't care. I would personally ask them for their help. I know it sucks to have to ask since it's like they should automatically show support, but they won't know you need them if you don't. Also don't be afraid to tell them what you need. I think the caregivers and family often feel helpless since they don't exactly know what to do to help.

I pray that God gives you all the mental and physical strength you need and that your family responds in a supportive and loving manner.

God Bless you

I had a very close friend who disappeared when I was going through my cancer treatment. She never called, or stopped by to see how I was doing. This hurt. I realize that some people just dont know how to deal with cancer. It reminds them of their own mortality. I have forgiven her, but I cant forget.
The people on this board are so supportive and will be there for you if you need anything. I know it would be ideal for your own family to step in but sometimes you just have to work with what you've got!
I felt terrible about my appearance also. It will get better. AMK is right, the swelling will go down and the scars will fade. You are still to early out to determine what it will look like after your face heals.
Keep in touch. We will be here for you.

Gordon,

This is a pep talk. Like you, I feel that I get the most support of what I have gone through, primarily via this OCF forum. One part of your original message I had to think over. It is when you state that you were never particularly close prior to dx and received only one visit from family during treatment. Ironically, I can relate. My only sibling, has given me the time of ONE disinterested phone call, and like Mellay, the only close girlfriend I had in town just totally disappeared right after dx. Although my treatment and surgery was less disfiguring than what you have posted, I must admit that I sometimes thought I was a monster.

I have long since given up on expecting any sort of compassion or decent behavior from outside family members. At this point, I count my blessings that I have my spouse and children. Instead of a girlfriend, my local pal is an interesting gay friend that told me "I never would run out on someone because of illness" In thinking over the past ten months of diagnosis, treatment and this long slow process of recovery, it's ironic how far I've come without the support of the people I thought were friends or had some biological connection to me.

It is most wonderful that most of the people posting have these wonderful supportive others in their lives to help them get through this. I had to realize that the people in my life were "limited" I had to face the fact that no matter how much I desired to be treated with dignity, compassion or even with some sort of normal interaction, it was not going to happen with the characters involved.

I must say, I've received more kindness from strangers over the past couple of months. Since this has probably been my toughest year ever, I don't have much use for people that treat me like crap. I really can't afford emotionally to allow people to kick me when I'm already as far down as I possibly can be---related or not.

Right now it's hard to have a positive attitude, but hopefully through sheer determination we all make it day by day, week by week and month by month until we crawl out of that dark hole.

It might be useful to contact your nearest cancer society if you need support. At least fellow cancer folks have the ability to relate. I've found it useful to sort of "rebuild" my support group.

Hope things improve for you. And DO stay in touch

Jen

Thank you SO MUCH, guys! Jen, what you said about contacting the local ACS really makes sense!!! I had gone through the motions 2 years ago (original dx/treatment), but never followed through.
I guess I've just got to accept the facts at face value- that my family just doesn't have time or patience to deal with this major change in me at this time. When I see them (inevitably, at Christmas), I'll get TONS of "pained looks" and "ohhhh, I'm so sorry; call me if I can do anything" type of responses. My "new face" will no doubt take more than a few of them by surprise- out of sight, out of mind, right?
I just wish that IT DIDN'T HURT SO BADLY!!! I can understand mentally how people turn away from something that scares them and reminds them of their own mortality, but EMOTIONALLY it's like putting burning coals on my (already wretched) heart.
THANK GOD for my few good friends and this website!!
Gordon

Well, Gordon, sometimes I just hate being a realistic stick in the mud, but it reminds me of one of my favorite Jack Handey quotes. "DEEP THOUGHTS by Jack Handey: The tiger can't change his spots. No, wait, he did! Good for him!"

Seriously though, being dealt the cancer card is a rough blow in itself. When people you assume would be supportive treat you crappy it's almost as much of a burden as dealing with the disease. Therefore, I can understand the "burning coals on your already wretched heart"

I remember telling one of my oncology nurses that I couldn't possibly hold up watching one of those Hollywood movies regarding cancer (like Love Story or Dying Young) She assured me that staying away from those types of movies would probably be a good thing. It is unfortunate we cannot hand our family members a script and demand they at least ACT compassionate.

For me, one of the major lessons I've learned through this ordeal is that cancer either brings out the best or the worst in people. As someone previously mentioned we tend to remind people of mortality. Although my new physical therapy place has done me a world of good, I sense at times that I put some of the staff ill at ease because of the big "C" The owner recently lost her spouse unexpectedly from terminal brain cancer. I most certainly feel her pain at raising seven kids without a spouse and know I probably remind her just how tricky life can be.

The most important thing for you to do is concentrate on you. I wasn't an incredibly vain woman before the big C, but really it took me awhile to go out in public. Then again, when I'm out in public, I take note that I'm not the only imperfect specimen out there. I see people in wheelchairs, walkers, and folks toting oxygen tanks. We are probably more self critical because our imperfections are on the face and neck.

This weekend a woman I know came over to me to tell me that she recently had to undergo having both breasts removed. After thinking about it for the past couple days, I know her road is just as difficult as mine has been.

As for my own holidays, I intend to have a calm peaceful private celebration with my spouse and children. Emotionally, I know I cannot take the baggage of big extended family get togethers. Also, as a matter of personal preference, I just refuse to be playing the "cancer patient" as it is all I can do to keep a positive attitude that I AM going to recover and sooner or later I will rejoin the ranks of the normal looking population.

Above all, don't let the dregs drag you down with them. I know it hurts like a son of a gun. I spent more hours than I can count using some very nasty vocabulary talking to myself about the extended family. And for the record? It's really not as uncommon as you would think for family to be non-supportive. In my PT's case, while her husband was dying from brain cancer, his own parents refused to even come say goodbye to him, nor did they even bother to attend his funeral (he was a doctor with seven kids and they didn't even come to help with the kids)

I like to think that despite my scars and boney skeletal frame, I can almost pass for "normal" Then again, quite often I think of all those non-perfect souls out there walking around POSING as compassionate people when they can't even be bothered to comfort someone in their own circle dealing with infirmity. Despite our physical appearance, I bet both of us are blessed with decent hearts. Even without having cancer, I've always been certain that what I have on the "inside" always far outweighed outside appearance.

Good luck to you, Gordon. And may all things,improve for you.

Jen

Gordon
I know it is hard to feel like you can go out in public and feel like a freak. I felt that way after my surgery. I hid my drains the best I could when I went to get them out. The staple necklace I had was still visible and some people noticed and some people didn't. I am still stiff & swollen from the neck dissection I had Sept. 2. I am just not as swollen as I was when I left the hospital.

As others have said on this forum measure progress in weeks or bi-weeks not days. We have our whole life ahead of us to get better. The scars will fade. The road my not be as smooth as we would like, I tell myself that if I'm on the rough and rocky road that I'm going the right way.

Family members can be the toughest on us. I tried to please everyone and took what they told me to take (the herbal stuff, and lots of other things that cured cancer) One told me that I would die getting the radiation because he had a friend that happened to. Well his friend happened to have smoked & drank for over 40 years what do you expect? Then when I decided to have my neck dissection I was told I was stupid and my doctor was a quack and all he wanted was to make money!!!!

My doctor was very patient with me making my decisions. But I'm glad I did what I did. I had to give it all I had to be sure I did everything to get rid of this disease. And when the test came back that there wasn't any cancer in the nodes then they were right. But it is my body and they didn't have to go through what I did. They didn't have the worry. We are not a close family (My sister is though and very supportive and understanding through all this.)

I would be there for them if I could and I know it is tough when family doesn't visit. It has amazed me on how many people cared and showed this after they found out and they I call are my family. We all have to look out for each other. That is what makes the world go round!!

Gordon I hope that things wiil get better. Keep posting and we will be glad to be there for you.
Take care
Love
Terry

Hello Gordon,

You really find out quickly who your true friends are on this journey. People you wouldn't expect step up to the plate and some you would expect help and support from remain absent? Some just don't know what to say or act to such a serious diaease.
I talk to more people on this wonderful forum for support and love than I do my friends. Who understands better than someone going thru a similier diaease.
Don't dwell on what you look like now. Your job is to heal both emotionaly and physicaly. I'm sure all of us wouldn't flinch at the way your face looks. I've taken the attitude to hell with them that judge a person by his looks without knowing why. Shallow people!!!
You should hear me talk, Some people understand
but most can't really hear me clearly. My weight is down to 126 but I still go out and act like a normal person. (If I ever was normal)

I won't let this bastard of a diaease control my life as I continue to fight to win the battle.
Remember your lips will heal and Stand Tall!!! Not many have been through what we have.

All my best, Danny Boy

OHMYGOSH!
It's gonna take a minute to digest all of this....my eyes are wanting to brim over and I'm not quite sure why.....
WOW. You guys are amazing. Talk about hit the nail on the head! It really IS amazing how, in general, we pre-judge a person by their looks, and totally disregard the heart. And I KNOW in my heart that I would never turn my back on a friend/family member that suddenly got hit with an "ugly stick". :-)

I bet more than a few of us can relate to the following; You go into a store where you've known the employees quite a while after not being around for a week or two....you see someone and say "hi". They have an look of recognition; followed instantly by a brief flash of curiosity; then comes the "pained" look and the averting of eyes; followed shortly by "oh my God, what happened?". Then they are suddenly too busy to listen to the answer in any more than the fewest possible number of words.
It's happened to me over and over and over.

It was really refreshing to see an old client this afternoon for the first time since surgery-she just smiled at me, placed her hand on my lower lip/face area, and KEPT SMILING.
No "I'm so sorry" or "it'll get better". Just simple human contact and compassion. I was dumbfounded and delighted. In it I believe I can see my faith in human lovingkindness begin to be rekindled.
I feel much the same way now after having read what you folks have shared. Thank you from the bottom of my (slightly less wretched) heart.
These words will be with me for a long time to come, and I truly believe that tremendous strength and resolve resides therein.

Gordon

Hello Gordon
I did get the pics, and you know what? Not as bad as I was expecting to see.

Give yourself time to heal.

I am sorry your family has not come to your aid as you had hoped. Some folks just do not know how to deal with sickness of any kind.
I do believe Jen is right ...a support group would really help right now.
Concentrating on your recovery is the most important part of your life at the moment. I hate to see you wasting precious energy getting irritated and angry with your family.
Forget them for now!
Take love and support from your friends who love you, they are your lifeline to recovery.
You will find as time goes on and the scars fade , and they will, that staying healthy will become your fist priority.
Hopefully you will never smoke again, I have known a few who continued to and I just do not understand why. I just cannot think of any reason why any person with half a brain would do that!

Try and chill a little Gordon, take some deep breaths and think positive thoughts. As we like to tell folks on the board, there is light at the end of this big old tunnel! Hang in there.
We will be right here for you.

Take Care
Marica