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

I'm glad you posted about a client who really touched you with compassion. Life is kind of funny that way. People you expect to step up to the plate and don't, seem to be balanced in a way by the unexpected kindness of others. After the hurtful reaction of some of my family members and a few friends, I began to become far more introverted than I usually am. A couple of clerks in the grocery store line, I had to tell them I'm a cancer patient (because I had trouble speaking) They always seem to ask me if I need help loading and always take the time to ask me how I'm doing. The Starbucks people know me from my almost daily order of frappucino's and the "load it up with maximum calories" and they always ask me how I'm doing. (I always give them a thumbs up while sucking down some calories)

Human contact is important. There's been more than one occasion where I think my motto should be like Blanche in Streetcar Named Desire "I've always depended on the kindness of strangers"

Sometimes, ya just gotta take your lovin' from the people who are willing to give it and ignore those who seem to have small hearts.

Jen (giving you the thumbs up sign)

Gordon that is a very touching moment. Brings to mind all that is good.

I had a similar moment when, shortly after my treatments ended, the wife of a business customer (whom I had never met before) stepped forward and gave me a big hug. Because I was in their office, on business, it caught me completely off guard, but was a huge moment of shared compassion at a time when I really needed it.

Oh crap now my eyes are welling up.....

Thanks

Gordon,

When I returned to work after my treatment was over, my lower lip was still paralyzed and my speech was still mushy. I work as a consultant to dental practices and my job is to speak all day. I knew I didn't look my best and I certainly didn't sound my best but most of the offices I went into said "you look great -- you'd never know" or "you sound great -- you can't tell at all" which kind of made me angry. I wanted people to acknowledge the struggle I'd been through and was continuing to go through.

What made me feel best was the people who'd ask "is your lip going to get better?" or "your smile is still beautiful to me" or even "you look kind of like a pirate" but they were really the minority. Most people just believe it is better to ignore it or tell you it is no big deal even when it is a big deal.

I also had people in my life who did not step up to the plate when I needed them, people I considered to be my "chosen" family and two years later I have forgiven them but my relationships are not the same. Cancer is a scary thing to everyone I guess.

But you have found us, Gordon, and we will be here for you through the good times and bad and none of us care what your face looks like. I am a dental hygienist so I can give you my professional opinion on your lips if you want to send me a picture.

Hang in there, it will get better, it always does.

Barb

Wow, Friends.
I've been away from the board for awhile (my computer was infected and I had a hard time re-connecting) and have been really missing everyone. Gordon, I cannot add anything to what has been said, but boy, do I remember the heartache and anguish we went through in this household while Tom was going through treatments. Luckily, we have a very loving and supportive family, but I know how hurt he was when his very best friend totally dropped out of the picture. We both know it was out of fear; the fellow was afraid of losing Tom and just didn't know how to act around him. Others stepped right up to the plate, coming to visit, taking him to appointments, etc. You do find a whole range of sensitivities during a time like this. Tom, too, felt very ugly and did not want to go out. It wa so hard for him at Christmas, when he looked his very worst....everyone was at our house and I know it was hard on him. But we love him, and it really didn't matter to us. When I look back at those pictures I am amazed at how much he has improved. While I doubt I'll ever see him the way I 'remember,' I am thrilled with how he is progressing and just happy to have him hear. The was a rough road, but the other side has shown that we have grown in our own capacities for consideration, compassion and respect. We do truly realize that when others go through difficult times, they need us. We notice people with disfigurements and now do recognize that a direct smile feels so much better (to us!)than glancing away from them, and we are sure it makes for a nicer day for them.

I hope I'm not just rambling....my vertigo is in full swing and it makes it hard to think straight....but I did want to add my prayers and best thoughts to those sent by our friends here.
They were rocks for us and will always be in our prayers.
Nicki

This is sorta an aside-the posts above to Gordon are all so beautiful that I don't have anything better to add-but one thing strikes me while reading through them. It is the statement that often friends and family members are scared of cancer patients and react by disappearing. I don't see my husband's dealing with his head and neck cancer or my friend's loss of both breasts any differently than I see an amputee or a sightless or deaf person or any number of other battles with diseases that may result in some physical imparement.I'm not "scared" of any of them. In fact, in our business, we make a point of identifying any physical or mental impairments so that we can design for maximum function and safety for the client and family. I truly admire folks who are strong enough emotionally to find the glass 1\2 full. They are the people I want to emulate. Keep going Gordon,you will find many people who will admire your guts and determination. Amy

Gordon,

These posts are all so wonderful. I just wanted to add that I've had my own struggles with family members wanting to avoid the impact of my illness--and in one case uleashing a boatload of resentment about how I wasn't thinking of their needs when I was going through radiation and chemo (actually, no, I wasn't thinking of their needs too much--they are an adult and it was all I could do to take care of my own needs)but I have also run into wonderful unexpected love and support from other folks.

I know how the rejection or avoidance from family members can hurt--there isn't any way it won't because you have a big heart-- but when you are fighting this disease, you can't let yourself wade in that pain too much--turn towards the blessings you have in life--we all have blessings, even if they are small ones--and take "the kindness of strangers" when it's offered. There is definitely as much good this brings out in people as bad.

Nelie

Gordon,
I have been following your posts, and haven't been able to come up with anything the others haven't already expressed (much better than I ever could). But I just wanted to add my sorrow for your grief over the loss of your "supposed-friends" and family, the loss of your old self-image and the aching in your heart. If you were as callous as the people in your "family", you might not even feel the pain as sharply! So, in my book, thats 100 extra points for you!
(Remember them when all the reconstruction surgery is done, and you look like Brad Pitt and they all want to come flocking back)

Live Well,
Andrea

Hi Gordon et al,

Know the feeling about "friends" disappearing very well. And the strange looks when I had just finished radio, especially the perusing look and frown from a young neighbour (8 yrs old), at my red, burned neck and cheeks, plus the long scar, from the radical neck dissection, and the water bottle in hand! The look from an innocent child always stays in your mind, but there was no difference in the way she treated me, just acceptance.

I always think of what my sister endured through childhood to adulthood. She was born with a cleft palate and hair lip...my mother didn't have her until after an operation to close the palate and lip. She was born in 1951, when microsurgery was not available. She had to survive the jests at school - she did cope when joked at by taking out her plate and saying, "this is my spider and it will attack you!"

When she was going to run away from home (as I'm sure most of us did when young), Mum said, "and don't forget your toothbrush...oh, and where will you brush your teeth?" Her response? She cried, unpacked her little bag and didn't run away!

Through her teen years she had several operations to have a decent looking nose, plus for other reasons. She worked hard for her speech to sound normal (I still get angry when I hear people do that "blocked nasal" speak, often used in comedy shows).

Through all of these handicaps she has more confidence and public personality than me, has two gorgeous children (young men now!). So I'm really not too worried about my appearance, which is minor to what she went through, and my scars are becoming less noticeable...

My friend who has cervical (another recurrence 3 years down the track, extra radio and chemo aren't working too well), thought my cancer was more difficult than hers, as I have to wear my scars on the outside. I thought hers was worse than mine, being on the inside (and also her treatment)! We have become much closer through our cancers...it helps to have someone in sort of the same ballpark to talk to...and I agree with others that OCF is such a great place...don't feel so alone.

Cheers!

Tizz